Carers responses

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I have a global tsunami of support from around the globe on social media as I have joined various global dementia carers Facebook groups who have thousands of members, not one has criticised my carers strategies. I have connected with many Professors, Deans of Universities and Vice Chancellors around the globe on LinkedIn, who have read my articles and not one of them has criticised my carer strategies.

What an amazing advocate you are Deanna. A powerful message about the plight of Carers. I hope it doesn’t fall on deaf ears. Carers and their LO are desperate for assistance. My Mother in-law & father in- law both died before funding came through for their care packages. When I spoke to someone at My Aged Care she told me “everyone had to wait”. 😢🤷🏼‍♀️

What an amazing person you are and going to be a huge asset to this forum. Your story could echo a lot of others here, tired, frustrated and some of us alone. The Journey is tough and feel our voices are muffled in political noise. Thank you for sharing this and everything else you have to offer. You are an inspiration to a lot of vulnerable and very tired carers here. KUDOS! Deanna and look forward to following your fight for the rights of both the carer and the sufferer. <3

Wow! Wishing you well, and thankful you’re choosing to keep speaking out about it. 💙

What an amazing person you are. So many need people like you in their comers. THANK YOU! <3

Fantastic Deanna you are giving a lot people some hope.

As a fellow only child, I can relate to part of your journey. Thanks for being so committed to improvement.

Linked in

Speech on YouTube

Excellent speech Deanna!! So proud of you !

Response from Premiers office another fob off

It’s so very sad and good on you for taking care of your mum. You should be rewarded not this!

Deanna Mastellone M Com they certainly need a voice! Good luck

Well done Deanna

Application to speak at the RC aged care

Best of luck with the application: your observations and experiences are important in shaping understanding of the issues of care givers.

Condolences for your loss. I hope that on this birthday you can begin to feel a greater ease in life.

It is a relentless task performed by wonderful people who are stronger than me

What it would be.like to sleep in just once or have a full day off

Wow, Deanna Looks like you are doing really marvellous work!

I feel every person involved in care requires an advocate to manouevre through the complexities of systems, processes and regulatory red tape.

Well done for your brilliance!

Keep going girl, the world needs you !

That is an enormous story filled with more emotions and problems than most people would go through in 6 lifetimes and you survived! A mighty battle won and I admire your strength and ability to carry on! Not sure I could have done it. ( a comment from Facebook after reading my story)

Deanna Mastellone M Com good luck! Such an important problem to raise awareness about and tackle. Keep up the great work👏🏿👏👏🏿👏

Raising awareness for carers and the money saved for governments.

If caring was a paid job, we could not possibly afford it.

Great job!

Deanna you are amazing

Thank you for the work you do.

You have so much strength through adversity, awesome lady xx

You could not have tried harder Deanna. Very proud of your efforts

Congratulations Deanna , on your courageous efforts for age care assistance, persistance to extreme , Sunday punch , enter parliament I am sure you would get plenty of supporters

Deanna Mastellone You are a soldier and the drive you have is insatiable. You deserve the utmost respect as most of us can be sheep or just don’t have any energy left. We need leaders like you and please keep us updated with your journey.

Deanna Mastellone I have watch a couple at present. Your story mainly which is so horrible. Yes, I will get more insight as I watch although I can see your strength already, drive and determination already. I will watch with interest.<3

Your doing a great job for the carers of dementia. It’s a terrible disease. Our government is pathetic in taking care of the aged with any disease. I think the level of care is so much better in Europe sweden and Norway.etc..

Keep up the inspiration madam D. I know it’s tiring but you need to fight for the love for elderly. I appreciate you very much.

You are our strongest advocate, Thank you 🙏😘❤️❤️❤️

Deanna it is said “what does not break us, makes us stronger” then you my dec must be developing the strength and resilience of titanium. You don’t give up and you don’t give in, oh to have that kind of strength with in - hugs

Deanna Mastellone this is so important, thank you for sharing. The type of post that should go seriously viral. Just wish life wasn’t like this so wrong on every level. All best wishes ( Hampshire, England, UK)

Deanna Mastellone, a great honour to share, believe me.

You do an amazing advocate. Full of admiration. 👍🏼

Deanna Mastellone Thanks for this, so important that this is recorded. People like you are the reason things will change and get better for carers. I could hear your frustration, but that emotion is what gets panels like this to sit up and take notice. you are the best, Thank you 💐

Deanna Mastellone thank you for sharing….impressive

Deanna Mastellone M Com I commend you for being a good caring person. Only your strong will and ability to bounce back can get you through this. All the best and hope the wrist heals quickly.

Truly amazing. Sound isn’t working on my phone. Will try iPad later. You are very inspirational. Cheers

Response re Centrelink debt collectors and being called

Deanna 1 : Human Services 0

👏👏👏🙌

Thank you again Deanna 😘❤️❤️

That’s great news Deanna. I really admire your courage and persistence. You’re an inspiration. 🌹

Deanna, as you say, the $63 weekly amount doesn’t sound much, but multiply and compare that amount needed to cover basic necessities and it does make huge different. I have done the maths.

You are wonderful in speaking for carers, regarding back pay etc. I could have been receiving it going back a few years, but Centerlink and Jobactive misinformed me. Result, financial hardship. Perhaps l need to send excellent letter to that minister ? Just saw above link. Thank you so much Deanna.

Well done. There’s not many of us who have the head space or energy to this type of stuff. Thank you.

It is absolutely ridiculous Deanna. I just don’t get it. These people in charge need to experience first hand what it is like, both in the home & in a facility. So much for quality of life. you are doing a huge job combating the system- keep it up if you can 😘🤗♥️

I know Stuart Robert Federal Minister for Centrelink. I helped him campaign when he first got in and then the 2nd time. He is very religious and despite all the negativity about the allegedly wrongfully gained payments, he has a good heart. Well done on your efforts.

So you are in Oz? That’s a great thing you are doing..keep it up ..I have been following the Royal Commission into Aged Care…my goodness…so much needs to change…

another wonderful advocate..your work in this is amazing…the government saves so much money to the detriment of the carer..

Shame they made you hurry…so much to say….and that’s the first time I had heard applause after..go you!!💖

Great Stand up so much abuse on the elderly and carers Official know but don’t have the guts to help you Its alright for them on fancy wages and comfortable life until it happens to there loved one Life and people are an ASS sometimes it gives the good people a bad name 💖

Typical Bureaucracy Deanna …keep going girl

Deanna Mastellone all of this is ridiculous, its like you have been targeted for some reason

Unbelievable so you shouldn’t pay anything. The hide of them.

Deanna Mastellone me to deanna i must be learning from you. As you know i work in a public aged care facility which provides exemplary care but there have been some changes recently which i do not agree with. I have made a stand and opposed these changes, and won. Only a very small change compared to your efforts but small changes make a huge difference to those they help

Well done Deanna U go girl.

I know very few people who would take on such an enormous burden for no other benefit than to help many others in the same position. Looking at your many struggles, it never ceases to amaze me that you still fighting. I wish you all the best 😊 Deanna Mastellone

Wow Deanna, that is such an incredibly tough journey and yet you speak with such poise and purpose. Moving to see you take on Goliath, they better listen!

Hi Deanna, I hope you are well. You are certainly going places. I don’t know if you have heard of my Mum’s 1st cousin who is a Professor of Gerontology at Kings College University in London. Professor Anthea Tinker

You’re admirable Deanna & inspiring many people. (Y)

Pretty good summing up not to be messed with.

Deanna Mastellone M Com I believe you. Though it’s not an easy path, you will achieve you’re passion driven & just keep adamant about the reason for ‘health reform’ & ‘health care’.

Deanna Mastellone M Com Keep up the good work. 🙌🥰.

Goodness me Deanna. This is a standard bureaucratic response. No consideration or insight into the plight of Carers at all. It’s quite disgraceful really. I hope your intercontinental missile hits its target and shakes up the entire system so it can be redesigned to address the difficulties lots of Carers and their LO are battling. Sending you hugs, strength and a truck load of determination 🌹

Typical. Vital community services….. what the heck are we doing? Caring for our loved ones is vital community services. Good luck

Go girl. You are one determined cookie. Love that you’ll never give up. You’re an inspiration to us all. Xx

Wow hope they listen well said!!!!!!!

Your a legend with all your hard work 😘

Politicians do not help unless there’s something in it for them. There should a revolution of land tax payers in order to get anything done. May be you could arrange one. I’m sure your Facebook friends will be very supportive me included😢❤️🌺

Sock it to them Deanna!!

The world needs you

Reply to my link on a cheat sheet for carers

Deanna Mastellone this is an amazing link!!! It outlined how long and complicated…. I have taken 3 years to get this far…. approved for level 3 home care package with entry-level 2… but not allocated after 13 months… live on the Central Coast NSW. I DO belong to 2 carers groups which I attend as often as I can… but for people who are working they are during the day…. I had to retire (at 65yrs) 15 months ago… not really ready but Bill needed me… hours of searching and filling in forms…

NOTE I only found this AFTER I had done a LOT of it…. 🙄

Go get them

amazing, congratulations and a good luck!

You will win all your work.One day victory in your hand.

Cheat sheet feedback

Thank you Deanna. I must admit, compared to everyone here. I got a lot of help, whether it was for Carers or Doctors and Nurses. But we need people like you to do this. Like I said, thank you.

Well done! Deanna Mastellone. I’m Learning heaps as well 🙂

This is so good, especially for newies!

Thank you, this is great for me.

You are a Champion for so many people - a Warrior in this age of complete capitulation due to overwhelming bureaucratic complexity - dispensing justice with your ultimate weapon the pen 🖊 - more power to you 🌩

thank you for sharing this its really helpful. I love mum who’s got Alzheimer’s and will do anything for her but its really emotionally draining and exhausting and Deanna seems to be on my wavelength about this even though we’ve never spoken. Thank you Deanna

You better believe she will she is a giant slayer, go Deanna

a brilliant initiative

What an amazing person you are, I admire your strength and determination, to not give up.

You’re amazing. You’ve done so much work. KUDOS to you Deanna Mastellone. wow !!!!

great mission. truly great. your mum is soooo cute. my mum loves hats too. <3

Thanks Deanna, It’s a heartbreaking journey . Thank you for your tips

You are doing an amazing job Deanna! Wishing you success!

Well done. Great to see someone truly making a difference.

Amazing work for all the thousands of carers out there … thanks to you 😘

Thank you so much for sharing and being a beam of light that you are every time We see your wonderful smile in Rose Bay. You rock and the world is a better place with amazing people like you.

To my speech in YouTube

This is exactly how it is. You just go continuously back forth from department to department- seems never ending.

Deanna Mastellone the aged care system needs a complete overhaul for future generations- thank you for doing something about it🙏

The work you are doing deserves so much more than a simple endorsement, so very happy to help in anyway possible.

Just read two of your documents. Wow Deanna. I’m in awe. Thank you so much.

I read some of you articles you have attached in the comments. After all you have been through to continue fighting shows your resilience. Thank you, you must be exhausted. Good luck

You are amazing Deanna! It’s so nice of you to share all your findings.

I work in a secure dementia unit & see how destroyed carers are by the time their loved ones receive 24 hour professional care. Something needs to be done

My carers cheat sheet

Deanna Mastellone fantastic resource

Thank you from all of us. We’re finding there is a lot of help Out there & material to read but you need to read and read to find out exactly…. “they” will not tell you of it.

Well done you. Some amazing key tips. Inspiring !

You are my hero

Everything on one PDF - will print it out for my GPs. I found it all after months of persistence

Awesome job

Deanna love this, thank you so much

Thank you sooooo much, Deanna, for your help. I’ll look into this, along with the Carer Tips… It’s appreciated VERY much!!!

I love your passion and dedication to the cause 👍truly amazing

Mega Congrats — what a wonderful lobbyist you are for such important issues– especially with your life experience. Your Mother would be soooooooo proud.

Deanna Mastellone So helpful. I appreciate it..

I’ve just read your article on carers tips for looking after a loved one with Dementia. I really admire the way you managed to keep your mother’s and your sense of humour alive during this period.

My husband is still quite early on through this journey but I can already relate to several of your interactions with your mum. If I can keep even half of your sense of humour going with my interactions with him both of our lives will be better for it. Thank you so much for being such a determined and outspoken advocate for all carers. I have soo much admiration for you!

Deanna Mastellone good ideas. We bought that clock a few years ago :-) We do use respite, she goes to adult day care twice a week. Repeat questions LOL. I anticipate the journey will get harder, and we have been making more steps forward to tackling the issues. Thank you for the information.

Deanna Mastellone that is long, I will have to stop now and get back to it Thank you, I am finding it interesting.

I wish you luck with what you have submitted and yes the financial burdens can be overpowering, its a noble cause that should be pursued in all avenues. Good Luck.

Deanna Mastellone you are a rock star :)

Deanna Mastellone that really is a lot to have endured. That you could deliver that speech and not be in tears, is impressive, and a testament to your resolve. So sorry you’ve had such a hard time. 💙💜💙

Hi Deanna, have not used this for so long , but saw your name come up, you are amazing , everything you have done for dementia, and for the cause is wonderful

All the Best Deanna, I really admire your Courage, Passion and Energy 😊😊

All the best Deanna. You are truly a champion for carers and their families worldwide.

God bless you.

You’re doing an amazing thing and pioneering the way for better treatment of carers. This is huge and I wish you health and strength so you can fight this battle and of course I wish you much success ❤️

Deanna Mastellone thank you very much appreciated x

Thank you. This will be helpful for many. Working on starting a support group for caregivers in my area. 🌺🌺🌺

Hi Deanna Mastellone if you have not been told today. You are a HERO!! Looking after ageing parents taxes carers incredibly. Bless you for creating awareness. I swore after my experience I would write a WTF guide for the uninitiated in the Aged Care system.

My Deanna, I know your drama during your mothers illnesses You were brave and on top of it you fought for all the carers in general. Sell everything. Sell what !!! What ever the parents did to make the only daughter they had their little flower , so she can be happy one day in comfort ? If they knew what you have been through they would be in shock 🌺

Deanna Mastellone, I heard Australia needs awareness! You sound like my kind of gal!

You’re a Kick Ass Caregiver Warrior!♥️🤺👍💪

You rock

We admire you

You’re a shining beacon! Thank you for what you’re doing. We need the same in the uk 💕

Your achievement for us carers so far is commendable !!! 🌟🌟🌟

We need more people like you. You’re doing an amazing job. Gods strength 🙏

Good work

I’m with you all the way..my husband is in care now..i took care of him at home for 6 years alone (no family and “friends” didn’t want to know) but my fight for justice hasn’t ended just because i am no longer his 24/7 caregiver..the fight continues for future sufferers and their families..i frequently lobby my local MP to fight at Government level to address the injustice of being forced to deal with the heartbreak Dementia brings with little or no support either emotionally of financially..we must all play our part if things are to change..love & light ❤

Wow! you have my undying admiration..what a brave and courageous thing to do..and it’s because we’ve lived it we understand what destruction this dreadful illness can bring..it’s only then you realise how strong you really are..❤

You have worked really hard on this..my admiration is growing by the minute..if everyone pulls together we can try and change things..i’m going to invite a friend to join this group..she works for Alzheimer’s Society so has a platform..wish i could be in Rome to lend support..I wish you all the luck in the world with it ..

Boy do I know what you mean Deanna.

My Deanna, I know your drama during your mothers illnesses, You were brave and on top of it you fought for all the carers in general.You forget the ugly and mean people that they have been sick from jealousy all their life, 💖🦋🌈

Listen to Deanna

What a legend

Congratulations Deanna, you are gaining attention and respect from authorities , we now need to see some action, best of luck , on a lighter note , when visiting. Rome soon . Will you have any free time, love to get some photos of Italian town of Cremona, the home of the great violin maker Stradivarious, best wishes, Ronald .

Speaking at the World Dementia Conference in Rome - 14-16 October 2019 “You’ll do a great job for us all”

Carers Advocate from Canada wrote this on linked in, my voice is being heard around the world

“A caregiver’s life can become challenging in so many ways. Becoming financially strangled in order to take care of a loved one is heinous, especially by outrageous costs imposed by government sanctioned “care” services. Thank you for caring for your mum, Deanna, and for you advocacy work in support of carers.”

You are truly amazing Deanna Mastellone. I believe you are the embodinent of community hutzpah. Thank you for your fierce & noble spirit 💕💪

Thanks for sharing this with me Deanna. I really appreciate all you are doing and in my own way I am fighting the same fight daily having lost all of my parents and in-laws to mis-management in the system. Keep fighting as will I as it is the only way. I’d love to hear more about your carers cheat sheet and will keep your issues front of mind as I try to bring about the fundamental changes required for individuals, their Carers and their families. Cheers John (Professor at a University)

You are definitely an ardent campaigner for the rights of dementia sufferers and their carers, Deanna. I salute you! XX👍❤️

Look at the amount of work you have put into this! Deanna - you are a star! What a detailed resource and from someone is living it. Bravo!

Amazing work Deanna, it is all wrong all round the world, people work all their lives, they get dementia and they end up having to sell their homes to pay for care, Carers lose nearly everything because they become carer, nurse, physiotherapists, psychologists, unreal how carers are treated …. Great admiration and respect to you ❤❤ xxx

Keep up the great work! You’re a heroine to many of us living with dementia diagnosis!

You are doing great Deanna 😉

You are wonderful. Keep it up 👍👋💖

You go girl - we are with you 100 percent!

Good luck Deanna, continue the fight, you are awesome xxx

Awesome love, keep fighting the good fight ♥️♥️ xxx

Go Deanna! 👏 ❤

Great work Deanna it is sooo important what you are leading…well done!

Congrats!!! Awesome accomplishment!!!🎉♥️

You are a warrior !

Keep up the good fight for caregiver justice! I am rooting for you from the USA !!!

Go girl! ❤️

What an honor! Way to go!!!💞🕊️💞

Deanna Mastellone right on! 🕊️💞🕊️💞🕊️

Most excellent.

🕊️🕊️🕊️💞🕊️🕊️🕊️👏👏👏

Well done and may I betray my age by suggesting you sock it to them! It is good that your voice is heard.

You go girl!

Keep going Deanna..you’re making such a difference..the world needs people like you ..👏💕

Just read through your cheat sheet, so wonderful Deanna. It’s clearly filled with personal experience and practical advice- well done you.

I am very excited to see the video of you speaking in Italy.

You are a fantastic advocate for all carers around the world xxx

The government wants every last little dollar from you, you sound like a very strong person, you are most certainly a shining star in this deep dark world of dementia. Good luck from over the pond.

Deanna Mastellone I really hope that you have a chance of getting this done, everyone needs an angel just like you. Xx

Oh Deanna..you have my undying admiration..what an utter disgrace..having “assets” shouldn’t matter a jot but it’s the same in the UK..they will take what you have whilst others don’t have to contribute but we all have the same emotional heartbreak and face the same physical and mental toll on our own health..if i lived in Australia i would be along you every day helping you with your battle ❤

I wholeheartedly agree and it’s the same here and it’s been going on far too long..i actually had a Social Worker tell me “off the record” to spend any money we had so that the Government couldnt take it and would have to provide care..Dementia is the only terminal illness whereby you are expected to pay for your own care if you have worked hard and bought your own home etc..the injustice is devastating x❤

Carers all over the world get little or no recognition for what they do. Here in UK, NHS treatment is free, unless you get a disease called dementia. Then all official bodies collude together to take everything you have, house, savings, pension, you name it. Upon diagnosis, the 1st thing they all ask is “do you own your own house”, whereas they should be talking about your care and how you`re going to manage! Also, there seems to be a thing between some dr`s that anyone old should be given a dnr and “kept comfortable”, instead of treating them! I wish you all the very best xxx

Response to my post of the letter I sent to Commissioner Briggs 14 9 2019

That is one impassioned letter, good on you and I hope that all you are doing comes up trumps, you are an amazing young lady fighting for all carers xxx Sending love and hugs xxx

Keep going Deanna..you refuse to give in and go away as many would probably hope..your fighting spirit is so strong..you will win i know it xx❤

I’m about to go to bed but I just wanted to say thank you. Despite all the adversity you face you never stop showing care for others. It doesn’t go unnoticed. 😘💕 I truly hope you get to speak to the UN. I cannot imagine that privilege going to a better person xx

Ps I totally KNOW. You’ll be speaking in front of the UN

WOW! I just read through them this is amazing!!

that’s really great, hope you’re killing it at this conference!! this summarises so many important things!

Deanna..having been through a similar exhausting and emotionally draining experience albeit it was my husband and not my Mother..i know about the heartbreak, which changes you forever..you i can tell have become stronger..it’s wonderful you have been granted a 45 minute spot in Rome and invited to Barcelona! keep going Deanna 👋👋❤x

You are one strong lady to keep fighting xxx

Deanna Mastellone I agree love, happiness is a choice and you are an angel, everything you have been through, but still fighting ❤❤ Sending you love and hugs xxx I do believe that you will succeed xxx

Just letting you know, not that you need encouragement as you are the one that encourages everyone else!!- that I support what you are doing

You ARE a Phoenix!

So true, so sad….. you are the Phoenix fighting for all carers, you deserve a medal sweetheart, you have been through so much xxx

Deanna Mastellone I think you have an amazing following from people all around the world and all supporting what you do xxx

I wanted you to know how proud I am to know you & applaud what you are doing & the go fund me idea to get you to Barcelona is a great idea.

You are such an inspiration Deanna 😊😊😊💕

Grossly unfair for carers. Thank you for fighting for all carers, Deanna. 👍👏❤️

But you are pretty awesome you know. Much respect.

You deserve Respect from the Government bodies.

It’s more than the Poop up the wall it’s also the stressful and difficult behaviour and the tantrums and the wound dressings the Up and down to doctors and Hospitals feeding them when they are picky and fussy. Rushing over in an Emergency situation because she has fallen on the floor or another occasion because someone was trying to force her into Hospital when she didn’t need to go.

And the first time ever they were taken away the dignity of a elders and especially elderly women in their 70 to 100’s don’t understand what they are doing to them. A conservative lady has never had anyone touch them for personal care outside of their families. And it usually the girl children that do this kind of care for their mother’s or sisters. It deeply personal space.

Then stranger and others come and take all the rights and dignity away.

A full time care aid and a Nursing aid would cost a lot of money as a wage but most family carers actually get paid very little and sacrifice a lot. Some may work as well as they have too some run businesses and some are mothers and fathers themselves. Some have other medical problems themselves too. But it just in a day of juggling everything when you are so worn out and tired.

She always had food with me of a high level and quality and she never had to go without. There where games along the way and stunts that others pulled to cause problems and un necessary problems especially with food issues and other stunts. But Found the food that was in Nursing homes was worse than prisoner food and there was those that suffer from UTI not been allowed to go to the toilet even or bathed regularly and daily and roughly handling. But it only when others inferences that cause so much unbelievable trauma and stress.

It’s a very painful experience and their is loss and grief but their will be no grief payment as I was not on a carers payment or allowance but it may be possible for those lucky to get carers payment or allowance a grief payment.

It’s unfortunate that the government and others make people a victim of the unjust system. Even when they are survivors and warriors.

Keep fighting 🌹☘💗💕💞

I know I would be beyond furious, for such a small amount you’d think they would simply waiver, re my carers allowance overpayment of $372.00

It’s so unfair. You never received any help and now you have to repay them for work not done in the private sector it would be unthinkable. No wonder these people don’t work in the private sector. They would be fired on the spot. Keep at it. I’m sure you’ll achieve your goals eventually 👍

They need to make the information more available. Its not supposed to be a secret. When you are getting a care related payment and you report that the person has passed they should provide you with a link to the bereavement payments

I think you are a champion doing incredible work. I do hope you set up a go fund me for Barcelona June 2020 conference. I think you might get a really nice surprise Deanna.

Love you for what you are doing.

It needs to be the same wherever you are in the world and the agencies should guide you to each other especially when you are grieving xxx Keep fighting love xxx

wow…I am so proud of you Deanna! This is outstanding news. A 45 minute speech is big time! You are fabulous

Responses to my trip to speak at a Dementia conference in Rome 15.10.19

Travel safe and good luck. Thank you for all you are doing.

Very exciting I’m sure it will go very well

Safe travels and kick arse Deanna x

You are a beacon of light. May it shine so brightly upon you. Be the voice for carers 🙏👏👏. Enjoy.

Know you have many caring and loving people standing beside you.

All power to you Deanna Mastellone your making a massive difference out there. ❤

Deanna Mastellone my family and I are with you all the way x

Awesome Deanna, we are all with you, here’s hoping you make a change with this speech ❤❤❤❤ xxxx

You are a bloody star ! God Bless you Deanna 💖

Deanna, wishing you all the best with success, thank you for what you are doing. Incredible.

Sending love.

🌸🌸��

Wow. Honestly, hats off to you. Good on you. It’s so inspiring

You are a champion of the people Deanna. Good luck in Rome xx

Wow I’m so proud of you Deanna and I’m so glad you are in my life. You will sure make a difference for all carers. We are 100% behind you.

Especially because of people like you! Thank you for what you do Deanna.

🕊️🕊️🕊️

You are a warrior!!! Blessings for a successful conference and presentation!♥️

Know you will do us proud Deanna! Good luck

Wishing you all the best Deanna for your speech. You’ll be amazing and I’ve been so excited to read about all of this as it’s unfolded. And using the power of your experience (in all it’s goodness and grief) to have this opportunity. Use your voice! GO you!

Behind you all the way Deanna..glad you had a good time with your family..keep the posts coming 👏❤️

My thoughts are with you for the talk..you’ll dazzle them ..no doubt !!

Your hard work and dedication are commendable … I’m so proud and excited for you … Good Luck xxx 🌈😇🏆🏵🔥

We are suffering the same in USA! Many cannot afford to stay in their homes, pay living bills, eat or pay for medication! Getting help required more money to hire lawyers to read thru the mountainous red tape and forms. Most seniors do not have online ability or knowledge so are left to die. Medical bills have taken all if our savings…we have no place to go. Many can’t afford to be buried! How sad is that? Help is needed worldwide for seniors!!!

Hon. Professor Deanna Mastellone, research and hands on experience of being a caring lady, who has cared for and still will until her last breath, the people of this earth. You are just as qualified and knowledgeable as each and everyone else at the conference in Rome. You are amazing, your speech will be AMAZING 👏👏🤗🌺 👏👏👏

Thank you for all you are doing, let’s live in hope that there are answers,there are cures and there is prevention just around the corner 😍😇

Deanna Mastellone thank you for being the voice!

And no recognition for the skills and knowledge we gain along the way. The shit we do that is more than a carer I. A facility is allowed to do yet can’t work in the community in wound care without having nursing background to follow woundcare specialist instruction on dressing changes. Yet u set skilled new nurses and older more experienced ones to not following specialist advice, using their own techniques, no consistency of staff. If we were to list the skills we have and have them recognized it would be a boost for us to move forward after caring or even work part time or casual in our community utilizing these much needed skills. Bet not many people have performed daily enemas. Just saying

Yep my upcoming battle is how I was supposed to support someone for 6 years and hand her over to a nursing home with the exact money she started with 6 years previous . Some like to smoke , drink or gamble or god forbid be allowed to spend their own money before they die as they see fit .

How is one carer worth anywhere up to $1500 a week and a family carer worth zip . I’ll hire the bus and recon we drop a few thousand lo s at centerlink . Destroyed our lives and future doing the right thing

How do we help? We applied for carers Payment but because we had assets we were meant to spend all our savings, then sell our investments to fund caring then once down to our last $ Centrelink would keep us on a carers Payment until mum passed and then move us to the dole until we got a job again to restart saving all over again. So so wrong

Had one just like it .

The name tag on the chest and dropping at centerlink is a good idea but a better idea is to send them into a bank with a toy gun to make a withdrawal , instant room and board and you can have peace

I lost hundreds of thousands in a similar situation about 800k ?? Or more

Wirh my wife and I looking after mum , caring for her was a two person job as she was volitile and stabbing the kids with cutlery and other items etc etc o got fifo jobs that lasted a couple of weeks before i had to come home as my wife was struggling and now being threatened with legal action for 300k as mum contributed money to us for her care to keep our house to continue to look after her with almost no income and still soending her own money whillst with us and me responsible for an existing family of 5 . I am an only child and there was no options for us . In hindsight on day one i should have pinned a name tag to her and dropped her off at centerlink . This is a brief description of the pain of 6 years of full time care The government can put a figure of around 80k ?? a year on nursing home fees but it doesn’t work the other way , she refused to go into a home but no spots anyway till a stroke

You’re a legend Deanna Mastellone 👍👍👍👍

Since sleep is important for many reasons, that’s one thing most carers are lacking…like me! He wanders all night and meds won’t keep him asleep and they’re at the max!

I am losing sleep for the same financial reasons 😢.

What an honour Deanna , good on you xxx

👏👏👏 well done Deanna! Shout loud honey, we will be with you in spirit, sharing your hard work with others to spare them some of the frustrations you went through shows what a big heart you have ❤️

You’ve put so much preparation into this. Go well my friend ♥️. Sock it to them!

Go get ‘em girl

The government is hoping they die, that way they don’t have to pay!!!!!🤬🤬🤬🤬🤬

Totally agree Deanna they have a lot to answer for 💐

We wanted to look after dad at home but waited and waited for level 4 package that never came. We had to put him in a nursing home now. Disgusting how the elderly is forgotten. 😭

My father in law was one of the ones that died 😢…approved for level 4…couldn’t even get a level 2 interim package….passed in his sleep 5 months after getting no help at all…and he only had one leg and was 93….disgraceful..

Disgusting but happening all over the world… I’m in the UK xxx

Beautiful as always. You are a wonderful powerhouse of information and there is no doubt this engagement alone, will propel you on to further wonderous adventures in educating the ones who need it…the medical and financial folks of this little blue ball.

Go get ‘em lady!!👍��💝💞💝

Family carers in the UK save the government millions of pounds each year.

Yet, as you so rightly say, it still costs for every little item . Here in this country the local authority will pay a certain agreed amount to a Care home if your loved ones collateral falls below £24,750 .

However, there is a shortfall in the costs that the family are expected to pay for. Even your loved ones home is taken to help pay for the costs.

So many people put their property in their children’s names to save losing their inheritance.

There is a seven year wait before it comes into force though.

It’s all so wrong .

We pay our taxes and national insurance all our lives and yet when it comes to old age you get little in return .

Some help is given and in reality no one is ever turned away but it comes at a huge financial and emotional cost.

Well done Deanna Mastellone M Com. And thank you for doing this for the rest of us too.

Excellent Deanna great work you do 🤗

Congrats🎉 I had no doubt that you’d be a huge success!

I just woke up it’s 3 AM and I was thinking of you in the important work that you do and I felt the need to say thank you.

You are an inspiration for so many carers all around the world ✅

Responses to my Speech in Rome 15.10.19

My speech in Rome 15.10 19 on YouTube

https://www.youtube.com/watch?v=1FrXlQg0V40

Hey Deanna, saw the youtube you are amazing human being. Keep going love you work, my mum is 90 and is now going through a bit of dementia and I just help her the best I can and keep praying for her. Harry parents are also elderly and heading that way. You enjoy the rest of your trip and come home safe. Bye for now and take care

I am in so much Awe if you.I hope someday we can meet in this lifetime

Wow awesome work Deanna. Just watched your speech. You go girl, on fire. Your determination is second to none and will Keep opening doors. Eventually your voice will be heard and the difference you are striving for. Will be enacted. God bless you ❤️

Marvellous speech Deanna - Australia needs to hear you also. You speak so well and eloquent. A gong for you ! 💕💕💕

Congratulations and well done achieving your goal and voicing your thoughts throughout your wonderful experience & journey. Brava 🤙Auguri❤️❤️❤️

Excellent speech my friend, excellent. 🙏🏽 Namasté

You go Deanna! I’m so proud of you! It’s not easy doing public speaking ! It took me awhile before I felt comfortable at the Common Council Meetings. So proud of you! You rock 😀

And it is an honor to connect with you

I watched the video! Was wonderful Deanna! Wonderful, insightful information. Thank you so much for stepping out and doing this.

Your Mama is VERY proud of her girl. 💐😊🕊️🕊️🕊️😊💐

Wow that is amazing Deanna. I’m sure that your contribution is just a valuable as a personal perspective / issue. Wow, your aim to speak at United Nations in New York, I don’t doubt that you’ll get there… your passion and determination come through. I’m so pleased for you and I’m 100% supporting you as my father became ill with frontal lob dementia and it was so disheartening to see how he deteriorated both physically and mentally. We lost him in April this year and so I’m just grateful that he’s no longer in pain, suffering…

Please do keep me posted as I’m very interested in this area and value the information you’ve already given… It is so encouraging to know that other countries are also working to help find a cure for this.

Wow that’s clearer. Thanks for shouting out for us.

Your presentation in Rome is so impressive … your hard work and dedication have eventually paid off … So so proud of your achievement … Keep on with your great work … Sending love and positive vibes your way xxx 🌈🔥🏆😴👏

You nailed this

And amazing woman doing amazing work. Maybe I will get to see you speak at the UN.

Ok… That speech was awesome beyond words….

Your mum loved seeing this from heaven ❤️

Absolutely marvelous Deanna..no stopping you now and on the world stage. Congratulations and look forward to seeing you soon. Xxx

Well done Deanna, you are such a brave selfless, incredible woman. I pray that you voice is heard and the ripple effect will follow xx

Well done. Your passion and drive is amazing

Wow So much information so powerful so great keep going Deanna you will change the world

My very darling and Beautiful Deanna

You been through a lot and your determination and courage will pay off not only for you but for everyone and your name will be in history

I am very proud of you, you are courageous and strong

You are the best

Thank you for advocating! We need more like you in this world….💜💔

The world need someone like you fight for carers here and around the world I will support you all the way

My Pleasure, Deanna! I really appreciate the work you are doing, i sincerely wish and hope more people recognize and accept these initiatives across the world. Cheers!!!

All the best Deanna. You are truly a champion for carers and their families worldwide.

Congratulations Deanna, keep doing your thing! 👌🏼

Congrats Deanna just amazing 💪🍀👍🤗

More power to you 😃

Congratulations Deanna, you’ve done so well, I sense your passion and determination, truly well done and quite rightly deserved

Great to see your passion paying off , well done

You are becoming a real world leader Deanna

Well Done Deanna you are a legend.

Wow you are doing awesome work. That is really great. Hopefully some significant changes will be made soon.

Wow that’s an amazing job you have done! All carers out there will be extremely proud of what you have done!! 👏

Interest to hear about the sleep… we are moving to a society of 24/7 work!

Great work! May GOD give you the strength and the perseverance to keep going!

😀Well done

One step at the time, Incredible history, Long commitment, Clear goals, Congratulations for the success, Hope to see you at UN

Wow great job

Amazing work Deanna! You should be so proud!!

Wow congrats!

Amazing work, bella. You should be so proud!

Go for it Deanna. Stay in touch. JTx

Wow You’re amazing!

Great work..we need devoted people like yourself…to fight the system…for better care

Keep fighting love, we are all behind you xxx

Very good initiative in today’s world.

Deanna Mastellone never give up think about all the people that are counting on you. You’re very brave and courageous. God loves you and he will take care of you.

Deanna carers just aren’t valued by the department. 2 year wait for package. It is so exhausting being a carer and trying to juggle other life expectancies, it just gets too hard. My hat off to you for keeping up the fight.

Blessing are coming … Continue to believe … You are more powerful than you think … Sending you positive vibes and best wishes xxx 🌈🔥🙏🏽❤️💥

I used to work at Centrelink in the ACT and was hounded out after highlighting the waste of hundreds of millions of dollars by people who were not born in Australia, but are running our public service.

Good luck, we are all with you in spirit xxxx

You are an inspiration for the whole world of carers xxxx

Congratulations on your brilliant speech !

Well done on all the change you are creating. It’s very inspiring.

Wow well done

Great news! You are such an inspiration to us all. Congratulations xx

Every time I see something from you Deanna I think about Andy in The Shawshank Redemption - you are amazing, and thank goodness there are people like you who are able to continue to fight for Carers’ rights.

This issues must NOT slide down the agenda, and I’m afraid so many of us are just trying to cover the bases day-to-day - just as I know you have done - and it’s too hard to put the boxing gloves on too. Thank you!

Winning with my battle with Centrelink

Thanks Deanna. You have taken on a Giant and won. That’s the Aussie spirit. Congratulations

Being invited to Montreal Canada to speak

Well done and congratulations - always knew you would be successful in your crusade 😍😍😍

So lovely to hang out with you, Deanna. You are truly inspirational. I’m so honored to know such an amazing warrior. Thank you for all your amazing work. You don’t just fix a problem, you aim to fix it for all. Amazing! J xxx

I gone through report it is excellent , one of the best

My Speech in Rome

Thank you Deanna You’re amazing and i can only cheer you on for the great work you’re doing

Wow You are a very special person Deanna, with a huge heart, determination and so much to share that will benefit many others. Well done! 💝

My dream to speak at the United Nations

Wow, speaking at the United Nations that would be the crowning event and “Grand Exposure”! Go for it!!! ♥

My Mission to change the world and speak at 3 global dementia conferences

So proud of you Deanna for being an amazing advocate for this cause.

Deanna Mastellone Wow, what a story. You are an Angel on earth. A friend of mine participated in this challenge. Perhaps you would be interested. https://www.nanowrimo.org/

Fantastic Deanna..you’re becoming a legend 😊 x

Deanna Mastellone thank you for fighting for us. We greatly appreciate your efforts.

Congratulations Deanna Mastellone your work is greatly appreciated.

Keep on pursuing your dream, making the world a better place

Response to being invited to speak at 6 global dementia conference, London, Montreal, Barcelona, Bangkok, Japan and Dubai

You are living you dream, to single handedly change the world. COMMENDABLE Dynamite Deanna. May God Bless you, your mum and dad must be looking down on you and saying that’s our girl 👧

You’ll be a busy girl visiting all those countries next year. Well done Deanna! Your dedication and hard work is paying off xx

You’re on your way to further greatness,! Congrats!!!🎉

Amazing well done Deanna. You’re a beacon of change for the world ✅💯🥇🎊

That’s awesome. I was asked to speak in London but I couldn’t afford to go to it. You can be our voice.

Amazing! A passionate advocate with great ideas!

Not surprising you have hit a real issue 👏👏👏

Nice one D 👏👏

Fantastic Deanna - You deserve every success ! 💕💕💕

Amazing. SO very proud of you to make such a difference in this world. xx

Congrats and well done Deanna! You are a blessing to all carers! 💖👏🌟

You’re on a mission👏🎊

That’s amazing Deanna.. Well done 😊

You are a 🌟

That’s fantastic Deanna. You should be very proud of yourself. I’m sure you Mum is.

You’re awesome, Deanna

Your mom is smiling down from heaven💕

I hope your go fund me will suffice for travel but if not i will gladly assist

Onwards and with determination - go Deanna, you are making a difference xx

You have worked so hard and deserve every minute of recognition for all you do for so many ! And to travel the world with you ideas is just the beginning ❤️💖 well done Deanna Mastellone xxx

👏keep going Deanna..we need people like you..you are a beacon and truly inspirational..if you keep your go fund me going i will gladly contribute ..❤

As an International professional caregiver, I would like to express my full support and congratulate you on your admirable mission. I wish you all the best. It is really necessary at this very moment, as Dementia is increasing at a frightening rate around the world, that many voices like yours are heard to sensitise all local, governmental authorities and the general public as well, around the world. I wish you the greatest success in your difficult and thorny path. Your dream is the dream of many of us. Let us unite our voices and raise them for our dream to come true. All together we will be heard.

Deanna Mastellone M Com Is the absolute expert in this space. How can we help people not fall through the cracks Deanna?

You are just amazing Deanna, I have the privilege to work with a lot of people suffering from dementia and their carers, as an interpreter. Your testimony is paramount. All the best.

Great, your mission is fantastic

Wow Deanna you are going to be very busy and all Carers and sufferers of dementia will applaud you and thank you.

Thank you for sharing your amazing story. You’re helping many people across the world perhaps more than you may know. Your mother would be very proud of you as you venture onto a global scale determined to make a change for all the precious carers. Hard to believe it’s already been 3 1/2 years. Keep going Deanna as it only takes one person to change the world. ✅❤️💯✔️🏆💖

Thank you for your time and tenacity to help people impacted by this terrible disease. Your work will surely be applauded by the global dementia community.

Wow Deanna you are going to be very busy and all Carers and sufferers of dementia will applaud you and thank you.

Bravo!🦸‍♀️💪👍♥️💜

The world needs to wake up to this global epidemic!

I Admire people who have a story to tell which in turn will help other people ..God bless you in bringing awareness of this disease on a global scale..

So glad you have nailed it and continuing to have opportunities. Well done

Thank you very much Deanna! 💖😊

You are doing great things out there! Change is much needed! 😘😘

You Go Girl—we need great people like you who are talented in speaking to large groups of people! I so admire your gift !

Sensational! Go Girl!

You are an inspiration and thank you for keeping the fight alive 💖❤️💖👏👏👏👏👏

Ps I totally KNOW. You’ll be speaking in front of the UN

Deanna, you’ve become the Greta Thunberg of carers! So proud of you!!

Go Fund Me response

You are amazing Deanna - I cared for my mum who passed away in 2010 and now caring for my sister. Everything you say is so true. Thank you and good luck

I have such admiration for you Deanna. You’re an amazing advocate for Carers around the world. I wish you every success in your endeavour to change the system for all Carers. Good luck Deanna. I hope you take a bit of time out to explore while you are OS.

I donated because I fully support Deanna in her fight to assist carers of the elderly

Spreading awareness of all the pressures that carers are under is absolutely critical

Understand the difficulties a caregiver undergoes and hoping to help Deanna’s drive to make a real difference

Thanks so much for sharing these. The world desperately needs your message with so many carers out there. Congratulations on such important work

This shows it’s a world wide issue eh? Cancer patients were treated similarly for decades, it took a long time before chemo became free in this country in public hospitals. One can only hope the Big D will soon be as acknowledged as the Big C.

Responses to my post

Since my speech as a carers advocate in Rome at my first global dementia conference 15 October 2019. I have now been invited to speak at global dementia conferences in London, Montreal, Bangkok, Barcelona, Osaka, Abu Dhabi, Amsterdam and Dubai.

Best wishes Deanna your never ending efforts to understand more about dementia your dedication and most important YOUR COMPASSION have created a unique way to understand more o comfort to give hope to all involved and also to the rest of the Community at large I am sending you Spiritual energy and ❤️🌈 cheers dear Friend 🌟😇😇m🌹

Well done Deanna Mastellone M Com Such needed work and I have no doubt you will end up speaking at the UN. Love the intention setting.

And the list keeps growing. Fantastic news ❤️

Awesome THANK YOU‼️👏💖💖

Congratulations Deanna, so proud of you girl!

That’s amazing Deanna! The power of your mighty sword - pen! Well done! Very proud of you!

You go girl. 💞

Deanna Mastellone M Com Wow! A passionate campaigner for change. Great presentation!

Love your advocacy … keep up with your efforts - very valuable!

LEGEND!!!!! SUPERWOMAN!!!! 💪🎉🙌😘😍💪🎉🙌😍😘

I’m so happy you won with Centrelink. Good on you! As I had said many times you are one wonderful person for doing all this and I’m sure I’m saying on behalf of all of us. YOU GO GIRL

Thank you for advocating on behalf of all of us who care for parents with dementia - it sure is a demanding road! Is the cheat sheet available/accessible somewhere?

https://www.linkedin.com/pulse/cheat-sheet-dementia-carers-when-first-diagnosed-21-mastellone-m-com/

🥇A beacon of light to so many.

Deanna Mastellone M Com thank you for sharing these. You are doing such important and useful work - nothing like lived experience in a space like this.

I met Deanna Mastellone when we were competing in #DecodingDementia2019 at Deloittes with MemBo Noticeboard. To say that she was outspoken, passionate and determined is an understatement! Thank goodness is all I can say, that we have people who are prepared to go above and beyond the call of duty - in this case in support of Carers who provide their unconditional support for people living with #dementia.

Never give up. STAY STRONG & SAFE. You have been given an opportunity to trailblaze a way from these bureaucratic nightmares and insidious injustices for others.

There’s always a reason and while still in this world the battles are never ending… have Faith and Trust on Him ….in the end you have the answers and rewards because of your humility, compassion, kindness and good heart… God bless !😍

YOU ARE SUCH a GREAT ADVOCATE and EDUCATOR about the disease!

Sending much love to you, as I ESPECIALLY APPRECIATE ALL that YOU DO!

God Bless,

Prayers have been answered, you are a hard worker fighting so many battles for thousands of people who has no voice but a cry in the wilderness. The Almighty has heard and answered your plea. Your trust in the God and yourself has made you succeed.

Love you work, you go Dynamite Deanna 👍♥️🙏😘

Thanks!!! You’re a true warrior for us!

Thank you!!!💜

Good for you Deanna..what a Warrior you are..we are blessed to have you in this fight and indeed the World 💕x

You’re a gift from heaven my dear friend …. KINDNESS IS ONE OF YOUR VIRTUE.

God bless…😘😍

Good on you Deanna!

Planting seeds of change writing to all 134 NSW MPs and I received this response

At least you got a reply. Hope you finally get the person that will listen and can make your changes happen.

💪🥰

Thanks for doing all the heavy lifting for us Deanna. We just received our Care Package for mum about 2 years after we started the process. We are happy but after the long wait mum is finally happy with a career (private) who comes to her so we will probably stay with that program as it would seem silly to muck that up now and start over. The system must be made more streamlined.

You are amazing 🌟

Deanna Mastellone WOW, GIRL—

I never knew! You are SO AMAZING to have survived all that, but EVEN BRAVER to ahare your story to inspire others!

You are TRULY AWESOME!!!!

Deanna Mastellone, Thank you so much for your advoacy!!💜👏💪🦸‍♀️🏆🎖🏅🥇💙💙

Truly amazing Deanna - your energy and drive to correct these injustices is beyond words! Big hug you xx

You are a great advocate for carers not only in Sydney and Australia but the World 🙏

Deanna

You are such a fighter for the people. I would be fascinated to know what /who you were in a past life/lives. I am betting someone loved and respected for fighting the cause!

Deanna it’s a massive work your submission. Congratulations and I hope it’s mix of practicality and serious humour strike the right note. Really sad about funeral costs..been thete too and I still have my mother’s ashes too

Well done Deanna and good luck in what follows. Xxx

You are a great voice for carers and speaking out

A true advocate. Your work on this area is outstanding.

You give so much good to the world. I hope it starts coming back to you. It’s what you deserve.

Unfair is a huge understatement..disgrace is more fitting..keep fighting Deanna..i know you will..💔

Thank you Deanna for connecting. And thank you for the remarkable work that you do. Best wishes,

God Bless,

Prayers have been answered, you are a hard worker fighting so many battles for thousands of people who has no voice but a cry in the wilderness

The Almighty has heard and answered your plea.

Your trust in the God and yourself has made you succeed.

Love you work, you go Dynamite Deanna 👍♥️🙏😘

Thanks!!! You’re a true warrior for us!

Thank you!!!💜

Good for you Deanna..what a Warrior you are..we are blessed to have you in this fight and indeed the World 💕x

You’re a gift from heaven my dear friend …. KINDNESS IS ONE OF YOUR VIRTUE.

God bless…😘😍

Good on you Deanna!

At least you got a reply. Hope you finally get the person that will listen and can make your changes happen.

💪🥰

Hi Deanna, Thank you for the update on your crusade and heartening to hear of some respectful support in find equitable justice and consistency in Law. You are doing what not many people can do and a lot give up given it is onerous to cope with dragging out tactics designed to wear down. Yet you need to watch Health matters as well. Kind Thoughts.

Thanks so much for sharing these. The world desperately needs your message with so many carers out there. Congratulations on such important work

Well done Deanna Mastellone M Com Such needed work and I have no doubt you will end up speaking at the UN. Love the intention setting.

And the list keeps growing. Fantastic news ❤️

Awesome THANK YOU‼️👏💖💖

Congratulations Deanna, so proud of you girl!

That’s amazing Deanna! The power of your mighty sword - pen! Well done! Very proud of you!

You go girl. 💞

Deanna Mastellone M Com Wow! A passionate campaigner for change. Great presentation!

Love your advocacy … keep up with your efforts - very valuable!

Well Done Deanna you are the voice who will be heard all over the World. Keep the torch alive! 🤜🚻��

Deanna Mastellone M Com Is the absolute expert in this space. How can we help people not fall through the cracks Deanna?

You are just amazing Deanna, I have the privilege to work with a lot of people suffering from dementia and their carers, as an interpreter. Your testimony is paramount. All the best.

Great, your mission is fantastic, will reach out when can integrate services

Wow Deanna you are going to be very busy and all Carers and sufferers of dementia will applaud you and thank you.

Thank you for your time and tenacity to help people impacted by this terrible disease. Your work will surely be applauded by the global dementia community.

Wow Deanna you are going to be very busy and all Carers and sufferers of dementia will applaud you and thank you.

Bravo!🦸‍♀️💪👍♥️💜

The world needs to wake up to this global epidemic!

I Admire people who have a story to tell which in turn will help other people ..God bless you in bringing awareness of this disease on a global scale..

So glad you have nailed it and continuing to have opportunities. Well done

Thank you very much Deanna! 💖😊

You are doing great things out there! Change is much needed! 😘😘

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Last modified 16 January 2022: Update from Forestry.io deannamm@bigpond.net.au updated content/en/articles/Advocacy/Carers responses.md (f52eebc)