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1 - Carers - Self Care tips

Carers - Self Care Tips

You are doing your best each and everyday.

Learn to live one day at a time. Worrying about tomorrow ruins today. Worrying about yesterday ruins today.

You will deal with the problems of tomorrow, tomorrow.

I don’t think about tomorrow it’s just what must be done today.

Remind myself everyday, this is not forever, nothing lasts forever. Just have to ride this storm.

Make sure you have something to look forward to every week. Lunch out, movie, coffee with a friend.

Make sure everyday you do something that makes you happy, watch the sunset, eat an ice-cream, listen to your favourite song, have a bath, watch your favourite tv show or movie. Have a rest. Do a crossword, read trashy magazines. Very important.

Learn and accept you can’t do all the things you want to do.

Do what you can and the rest can wait.

I don’t iron, clothes iron on you, creases fall out with your body heat. Too tired. Mum used to complain about her crinkly clothes but she’s used to it now. Have started a new fashion trend the crinkle cut look.

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1.1 - Organising diagnosis

Organising for your loved one to be diagnosed is always very hard as they are absolutely terrified. They will never admit they have a problem with their memory

There is a lot of shame and embarrassment associated with dementia

1 in 3 over 80 will be diagnosed with dementia.

Mum refused to be diagnosed would not go to the Doctor. Had to see my GP on my own and ask her friends to help me in encouraging her to be diagnosed. We had to encourage Mum that medication will help her feel better and that we want her to feel her best.

Diagnosis

Everyone who is diagnosed with dementia, is affected differently. There are over 100 types of dementia.

For over 65 years of age, it usually takes about 3 years to be diagnosed. For those under 65 years of age it can take as long as 7 years.

Mum was lucky, it took about 6 weeks.

My mum was diagnosed January 2013, I was working full time.

It is far better to be diagnosed as early as possible.

Their journey is unique - Mum developed a sense of humour

They do a mini mental test of 30 questions with their GP to see what can they remember. The GP provides a referral to a Geriatrician, which may take 3 months to make an appointment where they will undertake various tests, including CT scans to assess their brains. Mum was prescribed a dementia medication Aricept which only slows down the progress of the dementia.

As soon as they are diagnosed, ring Dementia Australia for their assistance 1800 699 799

In the beginning we all have a very short fuse and are so angry because of all the stupid things they do and the endless repetitive questions. Drives every carer crazy and we all feel like such horrible people when we get angry and upset with them. Luckily as they have no short term memory, they forget, but we do not and we all feel so guilty and ashamed.

I was forced to learn endless patience with much practice as it was not her fault she could not remember the answer.

Sadly with a diagnosis of dementia unlike cancer where most rush to help, most disappear and you are very alone. There is huge stigma and ignorance with dementia diagnosis, very tragic and we must make this change

Did you know only 30% of dementia sufferers are in aged care facilities and the remaining 70% are cared for at home by loved ones.

1.2 - After Diagnosis next steps

Once they are diagnosed and have been provided with medication, there are many steps you need to do.

Register for free training on dementia, the various stages and what to expect, to help you understand the various stages of dementia

First Diagnosed

I cleaned out her home, as being a child of the depression, she was a huge hoarder. Took me 18 months every weekend cleaning out everything. So her home was far easier to navigate and far safer for her. Best part of dementia when they are hoarders they can’t remember what’s gone!!! Heaven! She used to carry on and scream when I started and her friends would take her out for the day so I could clean out her stuff. I took 120 bags of her clothes to Vinnies. She would return home and ask “what have you been doing today?” I replied " nothing much!" when I had taken 3 car loads to Vinnies and filled all the rubbish bins to capacity and had boxes ready to put out in my neighbours bins on our weekly rubbish bins collection.

I converted her bath with an overhead shower to a walk in shower. As she declined purchased a shower chair for her to sit under the shower whilst I washed her.

Will ring you endlessly, as they cannot remember, drives you crazy, you learn the hard way to have endless patience.

When she was first diagnosed her favourite perfume is Chanel no 5 and she used 3/4 of the bottle in a month. I realised she was putting on perfume every time she went to the toilet. So hid the perfume. I now buy her Lovely by Sarah Jessica Parker reasonable perfume doesn’t matter how much she uses.

She would tell me the same stories over and over again. She can’t remember she told me the story, so I learnt to listen to the same story. I never said to her, I’ve heard this before, or you’ve already told me this story. We all learn patience the hard way.

They are obsessed with tissues. Never bought so many boxes of tissues. Tissues in every pocket, every sleeve, every handbag, drives me crazy. Under her pillows. When I do her washing have to check everything if I miss one then tissues are thru all her clothes.

They are obsessed with locking all the doors with keys Mum had 3 locks and I took away 2 keys as it was driving me crazy unlocking all the locks 10 times or more a day

She was obsessed with keys would take my keys and put them in her pocket and lock me out, drove me crazy. She would lose her keys and I had to go looking for them through all her clothes, handbags, hide them in drawers, drove me crazy.

They forget the kettle, the toast in the grill, so the smoke detectors would go off regularly, had to buy an electric kettle and sealed the grill so she could no longer use it and had to use the toaster.

Will put things in stupid places, crockery in the fridge and freezer, food and underwear in their handbags. Ice-cream in the fridge, milk in the cupboards.

1.3 - How can others help and support you

Sadly carers are left to do everything on their own - this is what others can do to assist you

How can you support someone who is a carer

What to Say

  • Can I help by driving you to the doctor?
  • I’d like to come over and sit with your husband while you go out.
  • What day of this week works best to bring dinner over?
  • I’m praying for you.
  • How is your loved one doing?
  • Here’s a gift certificate for ice cream or coffee.
  • Would you like to talk about it?
  • How are you really doing?
  • Can I help you with the laundry?
  • I thought of you and would like to bring a care package. When may I stop by?

1.4 - Become organised and clear out (update)

It is absolutely heartbreaking to watch them decline before your eyes and there is nothing you can do to stop this

Need to become very organised

1.5 - Stages of Decline

It is absolutely heartbreaking to watch them decline before your eyes and there is nothing you can do to stop this

Declining

Dementia carers face very different challenges to other carers. Because nearly all dementia sufferers become immobile, bedridden return to being babies and it’s terminal. There is no treatment nor cure.

Wandering

She would pack her handbags with shoes, underwear, food, to leave to go wandering so I had to take the garden gate keys away from her, so stop her wandering. Felt terrible doing this, but had to, to keep her safe

Loss of Memories

Mum would be become distressed when she could not remember things and I would reassure her by telling her, “I have all your memories, don’t worry, they are safe with me”, then she would relax and not worry about them.

They need 24 hour care. You can’t leave them as they fall and cannot get up. You have no life being a dementia carer. You sacrifice absolutely everything, your health, life, financial security,career, super, you are too tired to see your friends, ring them or go out.

Dementia care takes over your entire life as they decline they can do nothing for themselves

Dementia sucks the life out of carers as we have to be endlessly patient with all the endless stupid things they do as their brains are dying and no longer working. Everyone declines differently.

They can do less and less and return to being toddlers and babies where we have to do everything for them.

Forgot how to use the telephone a blessing, how to use the TV, forgot how to do everything, including putting on their makeup.

They don’t know who you are but don’t tell you.

Loved raspberries stopped eating those. Turned to chocolate eat a packet of tim tams or gaiety a day, didn’t care as long as she was happy.

As they go down will need a walking stick, then walker and then wheelchair. Plus shower chair as they need to sit whilst having a shower.

I ask her “Are you telling porkie pies?” She roars with laughter, but does not know what it means.

Another time Mum said “Is that your car up ahead?” I replied “Mum, we are in my car ?”

Mum kept commenting on my huge feet, and ask “what size shoe do you wear ? " I answer “gigantic or 100” and each day my shoe size got bigger

“Who’s that strange man ?” she would ask of my partner Paul, we would all laugh.

As mum is declining and struggling to walk. I hold both her hands and tell her to put her feet together when she is sitting down to help her stand up. If her feet are apart she has no balance. She tells me “I can’t do it”. I tell her " I can’t carry you !” So she stands up with my help but is quite wobbly on her feet. So then I tell her " stand straight like a pencil, head back." Once she is standing straight, she regains her balance and confidence. Sometimes I say to her when she is all bent over “not like the hunchback of Notre Dame”. Of course she tells me either “don’t be rude” or “you’re being very rude!” I reply, " really, have been working hard at it !" and we both laugh.

They become unsteady on their feet, kept finding mum on the floor. Absolutely Heartbreaking, she had 8 weeks of falls then stopped walking.

1.6 - Disappointment, criticism loss of friends and family

Friends and Family have no understanding of how dementia affects your life, unless they have lived it too.

You will lose friends, they don’t understand what you are going through

You will lose family members as they will turn their back on you.

A few will criticize you for your choices, when they have no idea of the hell you are going through.

I learnt to walk away and let those people go, don’t need toxic people in my life. Life is hard enough without thoughtless, stupid comments being a full time dementia carer

Many disappear and you feel very alone as no one understands unless they have lived it or are living it. Hence it is essential you join a local dementia carers support group and attend regularly.

I made friends with other carers and it is so nice to catch up for coffee or lunch and share our stories of woe and be able to vent.

1.7 - Exhaustion / Frustration / Challenges / being Late / no life

There is nothing like carers exhaustion - it completely sucks the life out of you

Unless you have lived it and looked after a loved one with dementia full time, no one understands the challenges and utter exhaustion.

For many it’s a very painful journey with loss of friends and family, unjust criticism and very little understanding.

I would go to sleep exhausted and wake up just as tired.

There are days where you can do absolutely nothing.

I have never known such overwhelming exhaustion, from being endlessly patient, having to think for them, do everything for them, run their lives.

The only way I could keep going was eating large family blocks of Hazelnut chocolate, in one hit, several times a week, to keep my energy levels up. Of course I put on weight, but was too tired to exercise as well.

We are all far more sensitive, as we are all so very tired.

There is no time nor energy left for you to have a life, being a full time carer.

Dementia caring sucks the life out of you.

You come last and you will run out of clean underwear, don’t care what you look like, have no energy to enjoy life anymore.

You won’t have time to do your hair, you will be too tired to eat well and watch what you eat.

You will always be late for everything and everyone. As you have no control over your time and life. As looking after a loved one with dementia is all encompassing.

No matter how hard you try, it is just your life of being a full time carer with dementia. Being Late !

You will be too tired to exercise, to go out, see your friends, to do what you want to do.

You just have to accept, your life is not your own whilst being a full time carer.

Many carers enjoy their gardens, balconies, window boxes, indoor plants. I love going to the Bunnings (biggest hardware store in Australia) to buy plants to plant in the garden, or for inside my home. Gardening is so very relaxing and rewarding as you switch off from everything. The garden always rewards you for all your hard work.

Feel like it is contagious, my words become muddled up, you do become resentful

Overwhelmed we feel like the walking dead, being a carer sucks the life out of you

I am worn out running her life. As they can do less n less, you have to pick up what they can no longer do.

I am too tired to cook, to ring my friends, to go out. I am constantly worn out. By the time you do all the looking after. There’s nothing left for you to have a life. It only gets harder as time goes by as they deteriorate. At times am too tired to sleep at night.

A friend with no understanding said to me “now you’re having a break, you need to exercise.” I replied “Impossible, beyond exhausted feel like the walking dead”. Need to recharge and do nothing. My partner looked after me, as my energy levels were minus 200% I watched tv and slept for a week at his home. I was so blessed I visited another friend in the country, who took care of me

I reminded myself every single day, no storm lasts forever and one day this will be over.

I would escape with Pinterest and gorge myself on beautiful places, photos and making up many boards. It’s like online shopping without the price tag. I would also watch my 600 lb life, Air Crash Investigations as watching disasters always makes me feel better.

1.8 - Personal care dressing

As they decline, you will need to do things they no longer can do for themselves

Personal Care

Mum loved going to have her nails done at the local nail shop, where she had a manicure and pedicure regularly, until I could no longer afford it.

Toe nails best to go to podiatrist

Take her to dentist every six months and organise transport to collect you both and take you home. Too hard going on public transport and expensive taxis.

Getting her up in the mornings

She used to call me when I was a little girl ‘lazy good for nothing’, well it’s pay-back time so I call her that now or ‘sleeping beauty’ when I get up every day. She roars with laughter.

Clothes

I do my best to make sure she always looks her best as if you look good, you feel good.

Put away their good jewellery for safe keeping, as they lose things.

Have to check her handbag everyday as she fills it with fruit, underwear, biscuits, cakes, tissues.

I bought from Kmart target black leggings with elastic waist and donated to Vinnies all her trousers with zips. Too hard to dress her.

I usually put her in her pyjamas around 5.30pm.

Doesn’t matter if she goes to bed in day clothes.

She cannot remember how to put her makeup on.

She cannot dress herself if she does she has them all muddled up, puts them on back to front, on top of her pyjamas, all mixed up.

Need to choose their clothes and help dress them

Dressing her, Mum would often complain “The sleeves are too long”. I reply “What’s the problem you are still growing aren’t you ?”

“I’m cold” She complains when I change her clothes " I reply, well you just have to wait, I cannot do this any faster"

Hawaiian Fridays

I dressed mum up every Friday in a Hawaiian shirt and silly hat. I collect silly hats and Hawaiian Shirts and have over 50 of each. They always make me happy. Who cares if people laugh with me or at me. When I worked in the corporate world I wore them every Friday, since my beloved Dad was diagnosed with a brain tumour in 2000. I call this my happy cupboard. When I worked with my favourite boss Adrian at MLC, I had a mirrored disco ball above my desk and we had Hawaiian Disco Fridays and I would play my disco music, spin my disco ball and get the the team to do YMCA at their desks.

So decided after being forced to quit my career December 2014 due to a horrible boss the Friday before Christmas, due to Mum’s dementia, I was absolutely devastated at the time. I would dress up Mum instead and continue my tradition of Hawaiian Fridays and posting pictures up every Friday on Facebook. She would go out with Holdsworth our local seniors community group on Fridays and they would pick her up in the local community bus. They would all roar with laughter when they saw her in a different outfit every week. She never wore the same outfit on Fridays. She loved wearing my many crazy outfits, including the following. Laughter is the best medicine.

I call it adult doll dressing, I love to choose her clothes n costume jewellery and make sure she always looks her best.

I tell her “you have your own personal stylist and hairdresser, aren’t you lucky?”

1.9 - Install cameras

All dementia sufferers loathe having a shower. As they decline you will need shower rails and a chair in the shower for them to sit on.

Install Cameras to monitor her when out

I wanted to install cameras with her homecare package so I could monitor her on my mobile phone when I’m not with her. Impossible to be with her 24/7. But I could not access a homecare package and did not have the money to pay for it, nor is it tax deductible.

1.10 - Showering

All dementia sufferers loathe having a shower. As they decline you will need shower rails and a chair in the shower for them to sit on.

Doesn’t like to shower. Make it a game Simon says, Deanna says get in the shower now.

I used to play a game with mum as most dementia sufferers loathe having a shower. I called it Simon Says, instead Deanna says. So she had no choice but to go to the bathroom.

One morning, when I went to the bathroom, getting it all ready for her and turned on the shower. I used to joke with her and say, “it’s your favourite time of the day,” as she hated having a shower and she would say, “no it’s not!”

Mum is in the living room and says” I felt the shower, its cold!!!”. “Cold?” I replied “ how can you feel it in the lounge room ?” “ I did” she replied.

Then I tell her " I can’t let you going out smelly!" she replies " don’t be rude!" When I have to do her hair and she does not want her hair washed or brushed I say, " I can’t let you go out with a birds nest on your head" She replies " Yes you can!" We have this daily banter as I know she finds everything a struggle and was no longer enjoying living anymore.

Put shower on as you undress them , so it’s warm when they get in

Put towel on toilet seat, to sit on, once out of the shower.

Liquid soap put in flannel to wash her in the shower.

Mum used to ask what is the colour of her hair. Ask a silly question get a silly answer. Every time I washed and blow dried her hair she would ask “what is the colour of my hair?” I would tell her a different colour - Pink, purple, green, blue. She roars with laughter. When I wash n blow dry her hair I would ask her what colour would she like. Pink became her favourite hair colour. Light, hot, pretty lovely Pink.

Becomes like a toddler, throws tantrums.

She used to carry on and complain, scream when I sprayed her with deodorant, drying her with a towel. You would think I was murdering her, so I said to her “no complaints are allowed or I go on strike.” So I stopped when she carried on and she roared with laughter.

If I touch her toe and she complains I’ve hurt her I tell her “stop being so greedy, you have another 9 toes, you don’t need that toe!!” She roars with laughter.

Now when I dress or undress her, she turns into a giant starfish or octopus with her hands wide apart hanging onto the rail in the bathroom. I have to tell her, “you can’t be a giant starfish / octopus, I cannot put on or take off your clothes” she laughs.

Heading

This is in bold adn this is in italic

This is a blockquote

List of things:

  1. eat
  2. drink
  3. sleep

bulleted list:

  • hello
  • world

[Dementia Support Australia](https://dementia.com.au/)

1.11 - Vital Call

All dementia sufferers loathe having a shower. As they decline you will need shower rails and a chair in the shower for them to sit on.

Vital Call

I had vital call, which is a button they wear around their neck, can wear it in the shower, so if they fall they press the button, there is a speaker in her home and they will organise assistance. Sadly mum could not remember what it was for. So decided to cancel it, as it was a waste of money. They do have falls and I did find mum on the floor a number of times unable to get up off the floor, which is heart breaking.

1.12 - Respite essential for your well being

Respite care is essential for every full time unpaid carer or you will be in your grave before they are

Respite Care Essential for your health well being

My GP said many in my generation are suffering health consequences from caring for elderly parents

I cried and gradually learnt to laugh my way through the muddle, the misery, the chaos, the exhaustion, the hell and accepting having no life of my own.

Being a full time carer, you have no life as you must do everything for them as they decline, they can do nothing for themselves.

Carers are entitled to 63 days per financial year in Australia

I would get to the point where I had zero patience, being angry and upset and not coping. Very normal when you are looking after someone with dementia 7 days a week. It wears you down. It is relentless

When they go into respite care, do not pack their best clothes, so it doesn’t matter if something goes missing.

I would tell mum, we were both having a holiday. She was going away to have some fun and I was having some fun at home. The first time she went into respite care, she was worried and asked “am I sick?” I assured her, and said “no, you are fine, you are here for a holiday and then you will be coming home.”

I would pop in every few days for a few minutes and not stay long, because I needed a rest.

They always return home worse and have declined. Need it for your sanity and well being.

(at the moment) Respite care for self funded retirees, we must pay for it, it is not included in Homecare packages nor is it tax deductible.

1.13 - Pull Ups

As Mum became incontinent I put her in pull ups

As she become incontinent I put her in pull ups. She did not like them at first, but it just became part of her routine. Far easier to do it early on, than having to deal with constant accidents everywhere and endless washing and cleaning up.

Best quality pull ups are far better than cheap ones. Otherwise poo goes everywhere, you are forever washing.

Baby wipes for pull ups are essential, Aldi make the best ones . I don’t have children, did not know. Do not flush wipes down toilet put in plastic bag with pull up.

Sudocream for her bottom so she does not get a red sore bottom from wearing pull ups 24/7.

Collect plastic bags and keep them with the new pull ups to put the dirty ones in

It does get easier dealing with the pull ups, you can barely smell it when you change them.

Chemist warehouse Tena pull-ups buy 4 get 5th one free.

Sheet protector with plastic and fabric for their bed to keep the bed dry. As accidents happen regularly even with pull ups. But not with the Maxi ones, money well spent.

She gets impatient when I am changing her pull ups and complains constantly. So I say to her " Just you wait Mr Higgins, just you wait" she laughs. She doesn’t like it being done and I tell her " Mum I hate it as much as you do, you don’t like it being done and I don’t like doing it, so we are even But it must be done !!"

1.14 - Food is their pleasure

Food is their great pleasure in life

Food

They become like toddlers, throw tantrums, crave sugar and become fussy eaters

Don’t care what she eats as long as she is happy. Used to get upset when she would eat ice cream and chocolate for breakfast, lunch and dinner. Who cares, probably her main pleasure in life. Like a toddler craves sugar.

Beside mum’s chair where she sits in the lounge room, I leave bowls of fruit, mandarins, grapes, raspberries, strawberries and box of biscuits, chocolates. So she always has something to eat. She grazes all day. Don’t care what she eats, as long as she eats.

I would joke with her, she hates meat and tell her her she’s having meat for breakfast lunch n dinner, to make her laugh.

My partner bought her a big box of chocolates one Wednesday night for her and I knew she would eat the lot in two days. Saturday morning of course the box was empty. I thought I’m going to have some fun with mum but did not expect her response. “Mum !!! I didn’t get one chocolate !!! " and she replied emphatically “neither did I!!!! " I roared with laughter and asked her “well who eat them? " " It wasn’t me” she replied.

1.15 - Dementia Clock - absolutely essential

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Dementia Clock

Clock best $$$ spent, Includes day of the week, month, date, saved me answering 30 questions a day!!!!

1.16 - Fun things to do (update)

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Games

TV

1.17 - Safety

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1.18 - End of Life Care

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Palliative Care

When she stopped walking 1 June 2018, I could not access a homecare package and I was desperate for help. I hired a hospital bed as I could not lift her up to feed her in bed.

Their taste buds change things they loved to eat, they stop eating. Mum loved fish n chips didn’t like it anymore. Became fussier and fussier.

Then they stop eating and only want soft things like, yoghurt, chocolate mousse, tiny pieces of sliced peaches. Do not want to eat anything savoury. Juice, no water . Don’t want to be turned, hate changing pull ups. Just fed up with living and life.

She made lots of moans and groans so I asked her “what’s wrong are you dying?” she replies “yes I am ! " so I reply " how long is going to take you?” We both laugh. You have to laugh or you cry. Then I say “well it’s not a good time at the moment !! " so we both laugh.

After all the help Mum had provided to so many, after all her tireless community work, after working hard all her life and paying taxes. When she needed help it was IMPOSSIBLE to access.

It was absolute hell on earth with nowhere to turn to.

I have never known such anguish and despair, when I could not access any assistance as Mum was dying.

2nd July 2018 Malcolm Turnbull announced $38 million for dementia research one of my carer strategies when I met with his office on 18th April.

After I had done all this………………

2 July 2018 the NSW Chief Tax Commissioner got a staff member to ring me and threatened to default my mortgage unless I paid my outstanding land tax on $12k on a payment plan till December 2018.

When I cannot pay my bills, am drowning in debt, all thanks to NSW Revenue unjust land tax double dipping.

I could not afford to pay for help, to help me look after Mum.

I cried buckets !

In desperation I rang St Vincent’s hospice, hoping I could book her in, they said, no, not possible, there is absolutely nowhere to turn to for help. 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.

Mum went down very fast once she stopped walking, absolute blessing, she was gone in 13 weeks.

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.

To make you all laugh a story about caring . The occupational therapist said to me , “now you need to roll your mother several times a day on her sides, so she does not get any bed sores.”

I had the uniting geriatric flying squad, a Dr, occupational therapist (OT) and physiotherapist. I was asked “have you been rolling her on her side.” I replied “no, too hard”

Jane the OT said “we will show you how to do it with a sliding sheet so you can do it on your own!” I thought to myself this will be very interesting. There was 3 of them and they absolutely struggled to turn Mum on her side. Inside I roared with laughter but kept a straight face. They realised impossible for me to do it on my own.

They also wanted to see if they could get Mum to walk with the Physio. I was also proven right. Mission impossible. They have kindly organised a hoist to be delivered on Friday to help me look after Mum as clearly she is impossible to move even with 3 people, let alone me on my own.

Mums air mattress was not working properly so the OT returned with a nurse who dressed mums bed sores and swapped the air mattress for another. I told her I roared with laughter inside when the 3 of them struggled to turn Mum on her side. They both laughed to 😂

When it’s their time to leave us, please give your blessing to go upstairs to heaven.

That their family and friends are waiting for them and they will return to looking and feeling their best. They will have a big welcoming party. They don’t leave until they know you are ok and you give your blessing to go upstairs.

If you cannot access any assistance and are in dire need of help

Uniting is the biggest Aged Care Provider in Australia and is part of the Uniting Church.

Ask your GP to contact your local Uniting Group who have the Geriatric Flying Squad. The squad includes a nurse, Doctor, Physiotherapist

Who will come out and assist you with equipment, nurses for dressing of bed sores, show you how to look after them at home

This is a government subsidized service and is free of charge

No Hospice access in Australia for dementia

We should have access to palliative care in a hospice, when our loved ones are dying, when they are not in an aged care facility and we have sacrificed everything taking care of them at home.

1.19 - They become like Children (update)

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As they Decline they become like children and eventually a baby

1.20 - Humour - made sure Mum laughed every day

I made sure we laughed every single day

Laughter is the best medicine

Mum n I whilst waiting for the Holdsworth bus out the front, every Tuesday and Friday, we would look at all the trucks driving by, deciding which was the biggest that would pick her up instead of the Holdsworth Bus and roar with laughter at all the buses and trucks.

I ask her “who is the bully?” She replies “YOU!!” we both roar with laughter

I ask her “who is the lazy one ? " she replies “You!!“we both roar with laughter

1.21 - Music is amazing (update)

Music helps the brain reconnect and brings so much pleasure to everyone

Laughter is the best medicine

Mum n I whilst waiting for the Holdsworth bus out the front, every Tuesday and Friday, we would look at all the trucks driving by, deciding which was the biggest that would pick her up instead of the Holdsworth Bus and roar with laughter at all the buses and trucks.

I ask her “who is the bully?” She replies “YOU!!” we both roar with laughter

I ask her “who is the lazy one ? " she replies “You!!“we both roar with laughter

1.22 - A Carers Story on Facebook

Sadly Every carer will be able to relate to some of this story. Sadly very few will have this happy ending with their family.

Just read this story on one dementia support group on Facebook.

Not my story, mum was never violent nor swore. Not all dementia sufferers are violent or curse or swear. They are all unique !

This is exactly what every carer goes thru - family have zero understanding of what it takes to take care of a loved one at home, full time ! This has a very happy ending.

“Sooooo yesterday was interesting. My hubby wanted to invite some of his family to our BBQ, not a problem. I told them to make sure they understand his mom isn’t who she use to be and things have gotten worse. As I’m cooking outside with everyone MIL comes out wearing bright yellow shorts, pink tank top, cowboy boots and a lampshade. You could’ve heard a pin drop. For us as in me, hubby, our children and their close friends, we are used to this, HOWEVER my in laws and their high horse aren’t. My Mother In Law (MIL) felt embarrassed and started having a melt down, so my daughter and her best friend go find a lampshade and came out wearing it to make her feel comfortable. Here’s where shit got real…..

My MIL sister started telling me that the way we are taking care of her was ridiculous and the reason why she isn’t getting any better is because we keep letting her do whatever she wants. Basically I’m letting her live like an animal. Soooo me being me, I told the bitch that if she didn’t like it, I’d gladly pack her stuff and she can take care of her. If looks could kill, she would’ve killed me. So I asked her, what? No answer????? God forbid she actually cares about her sister, let alone ANY of them care about her. So I told her to ask her sister what color the sky is, she asked her and MIL replied with “Green”. Her sister told her NO, ITS BLUE, my MIL threw a glass at her and called her a cunt and said its GREEN because God loves the color green. This went on for an hour. I pulled up Lewy Body Dementia and had MIL sister read it, also gave her a list of MIL medications and pulled up 2 videos, 1 video was from last year of MIL when she was some-what normal, how they remembered her and another video from 3 months ago, where she took her diaper off and pooped in the living room, when I asked her who did it, you can clearly hear her blame the dog. My husband asked me why I was doing this, I told him I was tired of fighting with his family, tired of them telling me what I should and shouldn’t do.

There wasn’t a dry eye and his aunt wouldn’t stop hugging me and telling me “Thank You “. I told them instead of me being a bitch, I thought I would educate them and if that didn’t work, well I was going to kick them out lol. Before they left my MIL sister sat me down and tried to give me some money, but I wouldn’t take it. Soo she asked what could they buy that MIL needs the most. I told them wipes and diapers. I woke up this morning to a knock on my door and it was packages of diapers. 400 diapers and over 2,000 boxes of wipes, with a note that read:

“There’s no words to describe what an amazing woman you are! Thank you for all your sacrifice, sweat, tears and most of LOVE. I booked your guys getaway for next month in Cancun for a week, everything paid for! Don’t worry, we will be there to take care of my sister while you guys are gone. Thank you for opening up OUR eyes and making us understand what you are going thru. Please let me know if there’s anything else you need.”

The continuing story, every Dementia carer understands this completely, unless you have lived it, no one understands Part 2

My MIL sister came over yesterday. The same 1 who sent me diapers, wipes and booked our vacation to Cancun. She will be in Vegas for 3 days for work and wanted to see what it was like to literally walk in my shoes. Yesterday she got 1st hand of what my morning routine was and lets just say MIL sister had a break down. I asked her if she wanted me to step in and she said no, she needs to learn this because they will be with her for a week. Sooooo I said oookkkkk. At first she tried to correct my MIL on EVERYTHING, clothes, her eating habits, her hygiene, EVERYTHING! After 4 hrs she finally asked me, how do I handle it. I told her I was just like her, thought I had to correct her, but I figure as long as she isn’t hurting herself, anyone, I let her do whatever she wants.

Current situation: MIL sister has been swatting an imaginary red bird for an hour. She asked when do I ever get to brush my teeth, eat or take a shower…. I laughed sooooooooo hard! I told her I didn’t even get to brush my teeth for Easter and yesterday was the 1st time because she helped with her. She looked at me and said I’M SOOOO SORRY! I told her, no need, you get use to it after awhile lol. Now, enjoying my candy that I couldn’t on Easter lmfaoo

Carers story part 3

Y’all don’t understand how much I’m sooo sad to see my MIL sister leave! It was rocky in the beginning but this woman literally understands and feels what I go thru. This morning she made breakfast and let my MIL help. As we’re sitting at the table MIL comes in wearing a lampshade, her sister said oh yeah let me go get mine! I crieddddddd!!!! Yessssss!!!!!! They sat there wearing lampshades, ate their cereal with NO spoons and just acted silly together. We all went to the store and YESSS LAMPSHADES AND ALL!!!!! Her sister said for the 1st time in her life she didn’t care what anybody said or even cared about the stares. They walked hand in hand and when MIL had a meltdown she sang THIS LITTLE LIGHT OF MINE (Her comfort song) as loud as could be. She called my daughter and asked her what should she do when she has a meltdown and she told her that songs calms her down. Her sister left but she cried and cried, she said I saw the good, bad and ugly and she found herself showing sooo much compassion she didn’t know she had. I hugged her sooo tight before she left. MIL calls her, her play date. She doesn’t know who she is, but her sister said she doesn’t care. She wants to be part of her living her best life because TIME is something we cant get back once its gone. She thanked me again for opening her eyes. Ughhhh I’m sooo sad she left, but her and MIL have been texting back and forth since she left an hour ago. #HUMBLE #BEGINNINGS#GRATEFUL

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2.1 - What is Dementia ?

Every day, we read of new treatments, tests, cures, the world is desperate for one, TODAY.

The sad reality, it is still, a long way away with over 100 types of dementia.

My beloved Mum did everything right, eat only organic food, cooked with stainless steel pans, exercised every day, used her brilliant mind. She taught at UNSW for 30 years. Ran the Rose Bay Residents Association for 20 years fighting for justice. And she still was diagnosed with dementia in January 2013 at 81 years of age.

I read up on all the right foods she should eat, blueberries, she had them everyday, I read up on all the vitamins she should take. Poor mum rattled every day with so many vitamins. She attended Tai Chi classes, Lesley one her amazing carers took her to yoga once a week, but sadly she still declined.

As she did, all I cared about, was, is Mum happy. This was my goal every single day. She could eat whatever she wanted, chocolate / ice-cream for breakfast, lunch and dinner. She hated showering, I made it a game and made sure we laughed every single time she had one and made sure we laughed every single day.

Our bodies were not designed to live so long, we are living far longer.

Programmed senescence time to live. has a cut off point of living well to approximately 70 years of age. As we are living much longer well into our 80’s and 90’s and beyond, 1 in 3 are being diagnosed with dementia.

Dementia is where their brain is dying, and parts of their brains stop working and for each one, it is a unique journey. It can also be called ‘failure of the brain,’ ‘selective amnesia’. When a Rolls Royce breaks down, Rolls use to day ‘failed to proceed.’

Everyone is frightened of being diagnosed with dementia, and so much is being done to create dementia friendly communities, ensure they have much support and care so they have a great quality of life.

But so little is being done for carers and I’m determined to change this around the globe.

2.2 - How can I help ? Write and suggestions

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Dementia like Climate Change is affecting everyone.

How can you help ?

Write to your local member of Parliament / Congress and ask for their help, perhaps copy these links, to create community awareness, ask for a reply and follow up with phone call.

If everyone sends one email, things will change around the world. It will force them to listen and take action. People power is what we need.

Sure politicians and public servants are experts at fobbing us off. I collect their responses to file 13, going nowhere. But I never give up.

Of course there are a number who are very proactive, provide enormous assistance and support.

Please advise me of any website and links that should be included on this website, including for your location

2.3 - Is Dementia hereditary ?

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Is Dementia Hereditary ?

No - it can be hereditary but not everyone is destined for dementia.

Over 80 years of age, one in three will be diagnosed with dementia.

My mum had dementia and I’m not interested in getting a test to see if I have the gene for dementia. Why worry about it for the next 20 years, I refuse to, as worrying ruins today.

Mum did everything right and she still got it.

Just like athletes who are fit and healthy and get cancer.

Life is a box of chocolates so make the most of every day

2.4 - Stopping Work to Care for Elderly Parents - Cost $885,000

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https://www.rate.com/research/news/stopping-work-care-elderly

RETIREMENT PLANNING

What Could Cost $885,000?

Stopping Work to Care for Elderly Parents

Aug. 17, 2020

by Carla Fried

4:20 read

Calculator can help you sort the financial and family considerations

Millions of women – yes, it’s mostly women – end up in midlife weighing a temporary work exit to care for ailing parents.

The economic cost can be devastating.

The Center for American Progress has an eye-opening calculator, designed to help young families understand the cost of taking time off to raise kids, and it’s also useful to estimate the financial loss from taking time off to care for an aging parent(s).

A 58-year-old woman making $85,000 today who started work at age 25 and has been contributing 10% of salary to her workplace 401(k) with a 3% match would lose nearly $200,000 in foregone wages and lost retirement benefits if she stops work for two years. Read on and you’ll see how the cost could easily be far greater.

That presumes she will be able to re-enter the workforce at age 60. Studies based on federal data suggest she will be hard pressed to ever find work at a similar salary: https://www.rate.com/research/news/work-longer-reality-check

Let’s be honest. After a few years of intense caregiving, returning full force may be asking way too much. Suppose her caregiving takes more than two years, and by the time her parents have died, she’s in her mid-60s, justifiably exhausted on many levels. If she chooses not to return to work (or a workplace hostile to older workers chooses for her), she will lose an estimated $765,000 in wages, compared to having kept at it until age 67 (when today’s 58-year-olds are eligible for full Social Security benefits.) She will also lose out on an estimated $120,000 in retirement and Social Security benefits. That’s an $885,000 hit.

To be clear, those are estimates. The Center for American Progress has to make a bunch of assumptions; it errs on the side of conservative estimates. Also, the calculator isn’t set up to tally the all too common double whammy: A woman takes a few years off to care for young children, and later takes a few years off to care for parents or parents-in-law.

An academic study a few years ago reported that among workers at least 58 years old, around 12% were caring for an elderly patient. More than one-third had made the decision to stop working. Research from Merrill Lynch and AgeWave found that 15% of women in their 50s were caring for a parent, compared to 8% of men. In their 60s, 18% of daughters are caregiving compared to 11% of men.

There is no easy answer as to what is best to do given the current environment, where the federal government shows no appetite for building better support systems for caregivers of all ages.

Money is never the only factor when loved ones are the centerpiece of a decision. But running the numbers may help you make the best informed decision, and highlight the fact that you are not just losing out on salary. ( A web search of “Center for American Progress Hidden Cost of Interrupting a Career” will spit out a link to the tool.)

If it is at all possible to continue working a bit longer, even if it means paying for caregiving, the math suggests it is a strategy worth considering.

If taking time off is the right answer and you have siblings, they should pay you for your caregiving, when possible. Sound weird? Seem odd to suggest? Maybe you need to run through the calculations one more time…with your sibs. At a minimum, they should pay you enough to fully fund an IRA ($7,000 in 2020 for anyone over the age of 50). https://www.rate.com/research/news/navigate-expense-caregiver

Ideally, your sibs and your parents would be able to provide you the funds to keep saving for retirement, and cover your rent/mortgage and basic living expenses. The goal is to not raid your retirement savings early.

And while the need and temptation to claim Social Security in your early 60s will be fierce, the reality is that you need to delay as long as possible. The higher guaranteed payout from waiting until your full retirement age (67 for anyone born in 1960 or later) or 70 becomes ever more valuable, given your foregone salary and retirement savings. https://www.rate.com/research/news/more-retirement-social-security-strategy

If you’re reading this and worrying that something similar might happen soon, perhaps now is the time to think a bit out of the box. Got some space in the backyard, or a garage that is ripe for a transformation? Building an accessory dwelling unit where a parent or parents can live nearby, yet give everyone some space, can make caregiving significantly easier. https://www.rate.com/research/news/bring-aging-parents-close

Maybe it’s feasible to keep working, at a reduced pace. That’s not exactly easy to pull off, as employers often aren’t exactly enlightened about the caregiving juggle. But if you are highly valued at work, you’re nuts to not at least ask about a revised job (at a lower salary) if you work from home. Even if you need or want to go into work one or two days a week, paying for care for those days is still going to make long-term financial sense.

2.5 - What is Ageless Play ?

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What is Ageless Play?

“Old People’s Home for 4 Year Olds”aimed at raising awareness of the benefits of intergenerational care programs and play for all ages.

Ageless Play seeks to bring together the generations through a range of playgroup programs, supporting communities and nurturing relationships through play. Playgroup State and Territory Organisations have partnered with ABC TV + iview and are delighted to be taking part in a campaign for a new series,

https://www.agelessplay.com.au/

2.6 - Global Websites - useful information

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Dementia Alliance International

is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . We seek to represent, support, and educate others living with the disease, and the wider dementia community. We are an organization that strives to provide a unified voice of strength, advocacy and support for our rights, individual autonomy and improved quality of life.

We provide online support groups and other activities for our members, free of charge in number of different time zones.

https://www.dementiaallianceinternational.org/

2019 Award Winner: Best Caregiver Website,

Sign up for free carer tips sent daily to your email

DAILY CARE

7 Steps for Hiring a Caregiver for In-Home Help

Why a Daily Routine Is Important for Seniors: 3 Top Benefits

Reminiscence Therapy for Dementia: 4 Ways to Bring Joy and Comfort

Activities for Older Adults

Activities for Alzheimer’s & Dementia

Managing Family Dynamics

Practical Tips

In-Home Care

Home Safety

Products & Services

CAREGIVER WELLNESS

ASSISTED LIVING

HEALTH CONDITIONS

INSURANCE/MONEY/LEGAL

+MORE

https://dailycaring.com/

iSupport is an online training programme to support caregivers of people living with dementia by the World Health Organisation

https://www.isupportfordementia.org/en

Watch on Youtube Tepee Snow which has videos on dementia that will assist you

https://www.youtube.com/playlist?list=PLqMTqkHkJstYY3MkjuGXKjMXo_mAUubSS

Read the Book 36 Hour Day by Nancy Mace

How do you tell children about dementia, this link may assist you, it also has a link to recommended books for children

https://www.youngdementiauk.org/telling-children

2.7 - 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 !!!

2.8 - Join Facebook Dementia Groups

Join Facebook groups where you can vent, ask for their advice and suggestions and learn from others.

Facebook Dementia Groups

Joining the Dots for Dementia

Lifted Dementia Support Group

Dementia Aware

Kick Alzhiemers Ass

Young Onset Dementia and Alzheimers (YODA) UK

Living with Thunder

Uplifting Facebook groups

The Kindness Pandemic

View from my Window

Creative Gardening Ideas

2.9 - Dementia Cafes - worldwide

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Dementia Cafes - worldwide

Where you can meet other carers and their loved ones for some social interaction

https://www.memorycafedirectory.com/

2.10 - Inspiring Words

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3 - Advocacy

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3.1 - Meeting with Prime Minsters Office 18 April 2018

It was so wonderful to be heard, to be able to tell my story, to be a voice for all carers and go through my carer strategies that I formulated that would help so many.

1. Funding for dementia research is a necessity for the global dementia pandemic

July 2nd 2018 Malcolm Turnbull announces $38 million dollars for dementia research!

I was absolutely thrilled, my voice has been heard

http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2018-wyatt092.htm

2. National Carers Card not means nor age tested for all full time carers.

  • Like a seniors card that provides cheap movies, theatre tickets, discount public transport and bulk billing for medical expenses.

3. Respite Care - must be Tax Deductible - capped in price for all care providers.

  • Respite care should be included in all homecare packages not just for those on a pension.
  • This is not a luxury it is a life necessity for every carer, otherwise carers will be in their graves before their loved ones.

How would everyone feel if they had to pay for someone else to do their job so they could have a rest. After working 7 days a week all year for $1 dollar an hour.

The govt recognises the huge toll of being a full time carer 7 days a week has on every carer.

Dementia sucks the life out of you and makes us all feel like the walking dead

For those who are self funded retirees, the cost of respite care is not included in my aged care home care packages nor tax deductible.

  • I have paid $8700 for respite care on my credit cards so I could have a much needed rest.

4. Cares Allowance full time carers, not well publicised,

  • Able to be backdated to when gave up career and stopped paid employment.
  • It is $ 63.50 a week a $1 an hour for taking care of my Mum, 7 days a week

5. HomeCare packages not well publicised for self-funded retirees.

  • Need a far Better way to provide all documents as they keep losing mine since July 2017

6. Legal Protection for Carers from siblings and other family members

  • when loved one has passed and then there is the division of the property.
  • No forced sale of the family home for 2 years.
  • Any legal expenses to come out of siblings share.
  • Courts must recognise sacrifices of carers in lost income super and loss of career.

7. Booking Holidays and accessing respite care,

  • Very difficult to access availability of respite care, impossible to book in advance.
  • Need search database of availability and book in advance for a holiday

8. Cold calling charities to be stopped

9. Land Tax to be assessed on a case by case basis when in dire financial straits.

  • No interest on payment plans

10. Euthanasia,

  • No baby boomers want to go into an aged care facility nor be a burden for their family, children or community.
  • We want to have a choice prior to being diagnosed

In Addition

We also need a Carers Ombudsman, to help us when we are facing difficulties, as there is nowhere for us to turn for help

We need a Carers Hotline to access urgent Homecare Packages, impossible to get help

We need a Carers Affairs for all carers like a Veterans Affairs

I am woman hear me roar ………………………..I can do anything !!!!!

My Mission is to ensure Australia sets the benchmark for the world for supporting carers and protecting their health and financial security!

Like Apollo 13 - Failure is not an Option

3.2 - RCAC round table speech 27th September 2018

My 2 minute speech helped ensure Homecare packages, carers, legal and tax are included in the terms of reference for the Royal Commission on Aged Care.

So many said to me, when mum got her wings 29th August 2018, “you don’t need to fight anymore for carers.” I said “no, things must change and I’m determined to protect all carers."

My 2 minute speech helped ensure Homecare packages, carers, legal and tax are included in the terms of reference for the Royal Commission on Aged Care.

“It is absolute hell on earth being a full time carer for a loved one with dementia at home without a homecare package, zero tax concessions = huge unjust financial worries, sleepless nights, living on my overdraft since 2015

Dementia sucks the life out of you, being endlessly patient, showering and dealing with double incontinence, makes us all feel like the walking dead from sheer exhaustion 7 days a week.

The Government cannot destroy our health, financial security, expect us to pay for everything, give us no help, nor tax concessions, when we have given up our careers, spent our super, when we are close to 60 and cannot return to our former careers.

If this is not addressed in a holistic way, the government will be leaving a gigantic legacy of the biggest generation the baby boomers forced onto welfare.

Carers are saving the government $40 billion dollars per annum. 1 in 10 Australians are carers

There is no age limit for those who need care, dementia, illness and frailty do not discriminate by age.

Carers by definition must also include children too

It must cover Taxation and every Finance Minister must attend

I was threatened by the NSW Chief Tax Commissioner to default my mortgage

We need a centralised taxation file system where everything is listed including dementia diagnosis

We need every Legal Minister attending, there is no legal protection for Carers FROM their families

No waiting lists for Lvl 4 Homecare packages, my paperwork was lost 4 times

Respite care must be tax deductible , included in all homecare packages, able to be booked in advance.

National carers card not means nor age tested

Carers Ombudsman

Carers Hotline 24/7

Carers Allowance $63.50 able to be backdated

Stop Cold calling charities

Carers Affairs for all carers like a Veterans Affairs”

Federal Minister Ken Wyatt for Aged Care asked for my phone number to discuss this further, I was the only one he asked at the round table I attended. Absolutely thrilled!

I am so determined to stop the hell and misery every dementia carer suffers.

I will not rest till every one of my carer strategies are implemented.

One voice can change the world and I intend to be that voice.

9th October Royal Commission Terms of Reference announced !

Terms of reference ‘deliberately broad’ for the Royal Commission

The Commission’s Terms of Reference were signed off by Governor-General Peter Cosgrove yesterday.

Federal Health Minister Greg Hunt said the terms were “deliberately broad” to let the Commissioners look into quality and safety issues and examples across the aged care sector.

The commission will cover care for people in aged care facilities, in-home care services and care for young Australians with disabilities living in a residential aged care environment

There is Huge ignorance in the Government of all full time carers suffering. We need every public servant to do mandatory online training session on dementia and how it affects the population.

My Mission is to ensure Australia sets the benchmark for the world for supporting carers and protecting their health and financial security!

Like Apollo 13 - Failure is not an Option

3.3 - YouTube speeches re Carers Sydney and Rome

My Speech at the Royal Commission for Aged Care Sydney 6 March 2019 My Speech at the Global Dementia Conference in Rome 15 October 2019

My speech at the Royal Commission 6 March 2019 over 6,700 views

https://www.youtube.com/watch?v=b7lnm_8o9FY

My speech in Rome at my first global dementia conference 15 October 2019 over 5000 views

Search with - Deanna Mastellone speech Rome 15 10 2019

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

3.4 - Achievements

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3.5 - Advocacy Cruise Lines Association Australia

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22 November 2019 I wrote to the MD of the Australian Cruise Line Association and requested they ensure all their cruise line members are aware of Dementia Australia Friends of Dementia.

The MD replied “We will certainly mention this to our cruise lines in our upcoming committee meetings, and share the link”

My response _"_Many thanks for your kind reply. That would be wonderful, this will help all carers who look after their loved ones with dementia who travel on cruises. Creating this much needed awareness will be an enormous assistance for everyone."

3.6 - Attending the Royal Aged Commission in Sydney

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When I attended the Royal Commission in May 2019

When it was seated in Sydney, I listened to a very eloquent and articulate Professor who discussed aged care facilities and the many challenges.

I was sitting next to someone and said “we must change the legal and taxation system so it is just and fair for everyone”. They replied, “Oh that will never happen!"

I thought to myself at the time, “then what’s the point of the Royal Commission?”

A few moments later I received a message on LinkedIn which said “you are brilliant, the world needs you!"

I had connected with another the day before and had sent her my articles to read and she kindly responded after reading them.

I thought “OK I must never give up and I must keep fighting for every carer around the globe!”

At morning tea I went up to the Professor and asked “what about carers the other 70% who are taking care of at home their loved ones?"

He replied, “well that will need someone with enormous energy!"

I replied “Well that’s me, and I’m going to change the world for all carers with my carer strategies!"

3.7 - Organisations I have written to

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I have also contacted the following organisations 10 August 2019 and sent them this link

United Nations via email and on Facebook

Commonwealth nations via email

African nations via email

ASEAN nations via email Facebook

South American nations via email

Royal college of GPs UK via email and Facebook

Royal Australian College of GPs via email and Facebook

American College of Physicians via email

American College of Physicians via email

This is their response, IF you want things to change in America, write to your local Congressman and make it happen! Ask for a reply and follow up with phone call. Only by asking for their help and the services you need and want, will you make it happen.

If everyone sends one email and follows up for a response, things will change! It will force them to listen and take action. People power is what we need.

Sure politicians and public servants are experts at fobbing us off. I collect their responses to file 13, going nowhere. But I never give up.

Of course there are a number who are very proactive, provide enormous assistance and support.

We all must work together to make this world a better place for everyone.

I wrote to WHO in August 2019 and they updated their dementia facts in September 2019

https://www.who.int/features/factfiles/dementia/en/

WHO Fact 5: Carers of people with dementia experience high strain Updated September 2019

Caring for a person with dementia is overwhelming for carers. The stresses include physical, emotional and economic pressures.

Carers require support from the health, social, financial and legal systems.

3.8 - 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 💖❤️💖👏👏👏👏👏

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

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!

Xx

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

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.

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!

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

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, 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 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! 😘😘

4 - Why every location needs a Carers Cheat Sheet (update)

I found the journey of being a full time carer to my mum, so incredibly hard, as it is so difficult to navigate the bureaucratic system for assistance. That alone is a full time job. This has taken me 6 years to collect all this information.

I wrote this carers cheat sheet to empower all carers so they can access the assistance they need NOW rather than taking years to find out what is available, which is what happens now.

So all carers are able to provide the best care to their loved one who has dementia.

The global dementia pandemic is like climate change affecting everyone on the planet.

Why, because 1 in 3 will be diagnosed. 1 in 10 become carers, destroy carers health and financial security and the governments are forcing most carers onto welfare for the next 30 years in their old age with ill health, after all our sacrifices.

For many the costs to put their loved one into an aged care facility, is just too expensive . Did you know 70% are cared for at home by loved ones.

The anguish and despair I read on all the Facebook dementia carers groups I have joined around the world, breaks my heart. Sadly this is the reality of every carer.

Unless someone speaks out nothing will change and I’m determined to protect our futures.

Every General Practitioner - Doctor (GP) in Australia should hand this information to every carer when their loved one is first diagnosed with dementia

For those in other locations around Australia and the World, you will have similar services provided in your location, that you can look up online and access.

My dream is for every location around the world to have a cheat sheet for their services including links and if they don’t have these services, create them.

2013 my beloved mum was diagnosed with dementia it has taken me all this time to find out all this information.

Other carers have provided some invaluable suggestions which I have included in this cheat sheet.

Most GP’s have little knowledge about the dementia journey for carers

After the Mini Mental of 30 questions with your GP and they have a decline in their memory capacity you will be referred for diagnosis with a Geriatrician

You will need to see your solicitor / lawyer to organise a Power of Attorney and Guardianship

They give you way too much information and this is what you need

4.1 - Organise Power of Attorney and Guardianship

Essential to organise this with your lawyer and loved one

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4.2 - Key phone numbers, websites Australia

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua.

When first diagnosed for dementia

Key phone numbers in Australia

Dementia Australia - phone number 1800 699 799

My Aged Care Australia - phone number 1800 200 422

If diagnosed with dementia under 65 years of age apply for NDIS Australia 1800 800 110

Carers can call Carer Gateway relevant to their needs and linking to organisations that can provide assistance 1800 422 737

https://www.carergateway.gov.au/

Care About Website 1300 713 407

Our team will clearly explain how different Government subsidies work and how to access the support you need. We’ll take the time to understand what your health, lifestyle and cultural preferences are. The providers we recommend have been carefully evaluated so that you know the choice you make is one you can trust

https://www.careabout.com.au/

Register for free training on dementia, the various stages and what to expect, to help you understand the various stages of dementia

https://health.dementia.org.au/

https://agedcare.health.gov.au/funding/dementia-and-aged-care-services-fund-dacs/dementia/australian-government-programs-to-support-people-living-with-dementia-and-their-support-networks

Mable - Redefining support for disability and aged care in Australia. One connection at a time.

Mable is an easy and safe online platform. Connect with people in your community and choose the support workers who share your interests and suit your needs best.

mable.com.au

Hatzolah is a free service to the Eastern Suburbs community of Sydney

When Seconds Count, Hatzolah Saves Lives phone 02 9371 2222

If your loved one has fallen and you cannot pick them up off the floor, they will come in a few minutes and assist you pick them up, rather than calling an ambulance.

Hatzolah’s primary goal is to provide a lifesaving bridge of medical care during the first critical moments of a medical emergency, whilst catering to the unique needs of the Jewish Community, as well as assisting all faiths in the local community.

Our responders are extensively trained and equipped to deal with any medical emergency, and responders regularly attend patients with issues ranging from chest pain, bleeding, full arrest, household accidents, asthma and road trauma.

Hatzolah responders are on stand-by 24 hours a day, 7 days a week, 365 days a year, including Shabbos and Yomtov.

http://www.hatzolah.com.au/

4.3 - ACAT Assessment Australia -Carers Exhaustion and Respite Care

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Carers Exhaustion

Commonwealth Respite and Carelink Centre 1800 052 222

https://www.carersnsw.org.au/advice/services-supports/respite-carer-support

In the beginning we all have a very short fuse and are so angry because of all the stupid things they do and the endless repetitive questions. Drives every carer crazy and we all feel like such horrible people when we get angry and upset with them. Luckily as they have no short term memory, they forget, but we do not and we all feel so guilty and ashamed.

Register for ACAT assessment by phoning MY Aged Care 1800 200 422

You can organise for another ACAT assessment after 12 months, as your loved one will decline and you can access more services to assist you.

Once you have an ACAT assessment and are in the My Aged Care system. You can access respite care, without a homecare package. Usually respite care is for 4 weeks, rarely less

Respite care 63 days per annum, essential for your well being, you access this through My Aged Care phone number 1800 200 422 and they will give you a code which will provide government subsidised respite care.

Answering their endless repetitive questions requires patience and is exhausting

Learn to live one day at a time worrying about yesterday and tomoz destroys today.

4.4 - Carers Allowance (Australia)

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Carers Allowance is means tested, you are not eligible if your income exceeds $250,000 pa not aged tested - Centrelink $63.50 per week

Carers allowance - when give up career register with Centrelink for $63.50 per week

https://www.humanservices.gov.au/individuals/services/centrelink/carer-allowance/claiming

When you give up work, apply for a carers allowance at Centrelink. It will take a few months to be processed but it will be backdated to when you first lodged your paperwork.

Carers allowance - when you give up your career, register with Centrelink for your carers allowance - $63.50 per week. This is means tested, you are not eligible if your income is over $250,000 pa, not age tested.

https://www.humanservices.gov.au/individuals/services/centrelink/carer-allowance/claiming

Carers Receiving Carer Payment are automatically eligible for a Pensioner Concession Card, which gives them access to cheaper prescription medicines through the Pharmaceutical Benefits scheme and medical services funded by the Government. This card also gives carers access to concessions provided by the State and territory and local governments

I have written to both Federal Ministers for Aged Care and Centrelink, that this should be automatic, rather than having to apply for it

https://www.humanservices.gov.au/individuals/subjects/payments-carers

4.5 - Companion Card - Cardholder Application Form Australia

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Companion Card Cardholder Application Form

This allows you to take your loved one out to the movies, theatre, ballet, museums. Your ticket will be free, as your loved one, would find it difficult to do these things on their own.

When they are first diagnosed, this is useful, however as they decline, it is just way too hard to take them to a movie. They will ask incessant questions and will not be able to follow the story.

All 16 pages MUST BE printed and send to Companion Card Program. Applications with missing pages will not be processed.

The Companion Cardholder Application form is available in the following format for you to download and print.

Please do not change any settings when printing this form.

http://www.companioncard.gov.au/cardholders_apply.htm

Cardholder Application Form (PDF, 134 kb, 16 pages)

4.6 - Dementia ID Bracelet Australia

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ID Bracelet

Organise thru Dementia Australia ring 1800 699 799 for an ID bracelet where her personal details are registered in a database. That the police can access should she get lost wandering.****

4.7 - Disabled Parking Card NSW

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Disabled Car Parking Card

Disabled parking card – Invaluable as they become immobile with a walking stick and then a walker, Westfield additional two hours free parking

https://www.rms.nsw.gov.au/documents/about/forms/45061469-mps-individual-temp-permits.pdf

Organise for a disabled car sticker, this is invaluable, as they do struggle to walk and it does make life so much easier. Download the form, take it to your doctor for them to sign and fill in. Then take the form and your loved one to Services NSW. Then take your disabled parking sticker and your loved one with you to Westfield Bondi Junction go to the concierge desk in the car park near the florist and you are given an additional 2 hours free parking. So you are entitle to 4 hours free parking. Very Valuable assistance

Disabled parking card – Invaluable as they gradually become less mobile, they will need a walking stick, walker and wheelchair, Print off the form, take it your GP to sign and then take the form with your loved one to Services NSW who will organise the card for you

At Westfield you can access additional two hours free parking, you need to see their concierge to register your number plate with your disabled parking card.

4.8 - Join Local Dementia Carers Support Group Australia

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Ensure you join a local carers support group

https://www.dementia.org.au/services/carer-support-groups

There are carers support groups that are run after hours, which will be invaluable as you start your journey of being a dementia carer. You will not feel like Robinson Crusoe, you can vent, learn from others and make friends with other carers. Unless you have lived it, no one undertands

4.9 - No hospice / palliative care for Dementia in Australia except in South Australia

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4.10 - Activities - Prior to Covid Australia

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Organise for them to go out with your local seniors community group who will have outings and activities, essential for their well being and gives you a break

https://www.dementia.org.au/services/programs

4.11 - Incontinence Allowance Australia

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Incontinence allowance

Incontinence allowance - register for this $10 a week paid every 6 months

http://www.bladderbowel.gov.au/assets/doc/caps/CAPSApplicationForm.pdf

Download the form and take to your GP to complete. Entitled to $10 a week given in January and July two payments to help with payment of pull ups.

When they become incontinent and keep having accidents it’s best to put them in pull-ups, saves you and your loved one being embarrassed. You will also need to purchase several mattress protectors, which will capture any leaks and not ruin the mattress. They are reusable and washable.

4.12 - Become a Dementia Friend - Dementia Australia

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Dementia Australia has created Dementia Friends to help others understand dementia. Encourage your friends and local community to sign up to create community awareness. There are similar links around the world.

Who are Dementia Friends?

The people in our community who want to make a positive difference in the lives of people living with dementia.

Why become a Dementia Friend?

Every 3 seconds someone in the world develops dementia.

Knowing how to help and understand the challenges they face you can make people living with dementia, feel accepted and safe.

How do I start?

Create a Dementia Friends account below, there you can listen to people with dementia share their stories and be guided through 3 videos (5 minutes each) designed to increase your understanding of dementia and its impacts.

https://www.dementiafriendly.org.au/user/register

4.13 - Taxi Subsidy Australia

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Taxi Subsidy

Here is the link to apply

Taxi Transport Subsidy Scheme (TTSS) Application Form – PDF

5 - Global Strategies

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Find out how to use the Docsy theme in the Docsy User Guide. You can learn more about how to organize your documentation (and how we organized this site) in Organizing Your Content.

5.1 - Legal Protection and Recognition of all full time unpaid Carers

There is no legal protection nor recognition for full time unpaid carers anywhere in the world

The legal system does not even recognise full time unpaid carers - all our endless sacrifices and relentless care is completely irrelevant.

Courts need to acknowledge the role and sacrifices of carers in families.

We need to protect carers financially when they have sacrificed their lives to look after a family member. Once their loved one has passed and their many sacrifices must be recognised and protected by the courts from greedy siblings.

Grief protection, they should not be forced to sell the family home for two years.

Should not be equal when one family member gives up work and sacrifices their life to care for an elderly parent. Other family member (s) then take this to court and the legal fess comes out of all the estate.

Carers do not need this additional stress after all the sacrifices they have made and utter exhaustion from caring.

There must be legislation, legal protection and recognition. If other family members do this, then the legal expenses should come out of their share of the estate not the carers share.

From the estate the carers super should be returned from the siblings share. This should be law. Plus the super they would have earnt whilst being a carer.

Capital gains tax, when one sells property, super amount should be deducted from the capital gains tax, plus the super amount they would have earnt whilst being a carer.

Plus income lost for caring for parent.

Plus all out of pocket expenses for looking after parent

Far more needs to be done to look after carers as they are the hidden victims who are suffering terribly trying to hold it all together for no pay and no understanding.

Most carers are drowning in debt not because they are extravagant

5.2 - Public Servants across the world must be accountable

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Public servants must be accountable the world over, like the private sector

With my dementia journey I have had to liaise with so many public services, many times was so frustrated by their lack of service and care. This is common all over the world.

Our taxes pay for public servants to look after us and they don’t, they do as little as possible and there is nothing we can do about it, until we change their terms of employment and they become accountable.

We have a lawless society where we have toothless authorities who do nothing but fob us off, including the Law Commission, Ombudsman, Regulatory Authorities like Sydney Water and Sydney Roads.

Consistent employment rules for everyone, if you do your job, you have nothing to worry about.

No more lifetime employment when our taxes pay for them to look after us, when so many do as little as possible, watch the clock and only work minimum hours and still get paid.

Why is it, they can earn more than their salary with overtime, and no one checks their overtime sheets.

If they don’t do their jobs they should be sacked, just like in the private sector.

In the private sector there’s rarely any overtime, you have a salary and work whatever hours are required to do your job, meet your deadlines and be accountable.

We want to attract the best people to provide the best service, care and cost effectiveness as so much tax payers money is wasted .

Of course there are a number who are very proactive, provide enormous assistance and support.

5.3 - Taxation needs to be fair, just and consistent

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Centralised tax file number, where everything is listed including

Geriatrician advises ATO of diagnosis of dementia patient and primary carer on both tax files

Dementia diagnosis

Homecare waiting list

Date when gave up employment to become full time carer

Provisional tax

Mandatory council fire orders

Mortgage for mandatory council fire orders

Land Tax

Centrelink payments

So they can see, can you pay your bills? What is just and unjust?

Because right now there are all different systems that do not talk to one another, which is creating huge stress for every carer with unjust state and federal legislation and government policies.

We need to throw out our extremely complicated Tax Act and start again and make it much fairer, simpler and consistent

In Hong Kong, they have have a flat rate of 17% so everyone is happy to pay their share of taxes.

No wonder so many find ways to not pay tax

Whereas in Australia with the black market of cash run businesses the country is losing $ 7-11 Billion in lost revenue.

If we were not taxed so high, far more would be far more willing to pay their share, instead of avoiding paying tax at all costs.

Go after the high end individuals who pay little or no tax.

The Asian community who pay zero land tax because they put a different date and place of birth for every property they own.

Go after all the companies who do not pay any tax.

Why is gas and oil companies off the coast of Western Australia, pay no tax, no royalties. They should not be allowed to set up nor drill unless they agree to pay their share of tax from their profits.

Every transaction a company makes should have a small tax, that way everyone shares the tax payments.

If every transaction in a bank account was taxed 1% , then there would be no need for income tax, as everyone shares the load and the government will have plenty of revenue to look after the country.

Disgusting when so many companies pay next to nothing in taxes when carers are saving the country $77 billion pa for all our endless sacrifices and receive zero tax concessions

Things must change.

In this budget 2019 -20 the government plans to spend $4.36 subsidising pollution for every dollar it spends on climate action.

  • $40 billion for the diesel fuel tax credit subsidy across the forward estimates, nine times the total budget for the environment.
  • A 39.7% per cent cut to the environment budget since 2013.
  • An overall environment budget of $900 million for 2019-20.

https://www.acf.org.au/budget_2019_20_devaluing_our_environment_fuelling_global_warming

Only 10 companies pay 45 per cent of all corporate tax.

https://www.theguardian.com/australia-news/2018/dec/13/ten-companies-pay-45-per-cent-of-all-corporate-tax-in-australia?CMP=Share_iOSApp_Other

Uber took $785 million profit out of Australia in 2018 and only paid $8.5 million in taxes, when they should have paid far more.

A $691 million “service fees” charge, otherwise unexplained in the accounts, did most to reduce the company’s taxable income.

https://www.businessinsider.com.au/uber-makes-785-million-in-australia-in-2018-but-pays-just-8-5-million-tax-2019-5/amp

Why is it allowed so many high end individuals get away with paying little to no tax !

https://www.theguardian.com/australia-news/2019/oct/29/company-of-anthony-pratt-australias-richest-man-pays-virtually-no-tax

Rich Australians lobby tax office to prevent increased scrutiny of their businesses.

https://www.theguardian.com/australia-news/2019/nov/13/rich-australians-lobby-tax-office-to-prevent-increased-scrutiny-of-their-businesses?CMP=Share_iOSApp_Other

How to pay $20 million tax on more than $1 billion in revenue — ask Amazon Australia

http://amp.abc.net.au/article/11719232

ATO data reveals almost a third of big companies still not paying tax in Australia

https://www.theguardian.com/australia-news/2019/dec/12/ato-data-reveals-almost-a-third-of-big-companies-still-not-paying-tax-in-australia?CMP=Share_iOSApp_Other

If companies paid their share of annual tax, there would be no need for Land Tax by NSW

Then everyone can be fairly and equitably assessed for taxation and not have unjust financial worries created by the government.

What should happen - we need fair and reasonable practices

When you become a full time carer, it should be on your tax file number, you have given up paid employment, and are entitled to your carers allowance from Centrelink from then,

Carers Allowance of $63.50 should be higher, $1 an hour for 60 hours a week of care.

We should be entitled to Newstart for giving up paid employment to take care of a loved one full time and not have to go for job interviews as we are full time carers.

You are entitled to claim tax concessions for all your care expenses that would be included in a homecare package

Including pull ups, outings with community care providers, eg equipment, walkers, shower chairs, which is all covered in a homecare package, when you cannot access a homecare package

The government recognises carers need 63 days a year respite care, this is not a luxury, it is a life necessity for our health and well being, or we will be in our graves before our loved ones.

Respite care can be claimed as a tax deduction and is included in all homecare packages.

No waiting lists for a level 4 homecare package, so carers can have a weekend off, to protect their health.

If carers choose to return to work after their loved one has passed, after all their sacrifices they should be taxed at a lower rate, so it is worth their while to return to work.

Capital Gains Tax - this was introduced in the 1980’s

When a property remains in the family and was originally purchased prior to the introduction of Capital Gains Tax and is handed down through the generations, there should be no capital gains tax. It is in effect a death duties tax

NSW Legislation for Land Tax is Amended

I am determined to ensure this is amended, and includes the following.

Such an unjust tax, when you are taxed twice and cannot pay your bills.

  1. Retirees, do not pay land tax
  2. Dementia full time carer, zero land tax
  3. Mandatory council fire orders and forced mortgage you are exempt

NSW Revenue must assess the ability to pay for land tax and must follow property prices which have dropped 20%

I want my $120,000 of unjust Land Tax returned from NSW Revenue.

This has caused me years of sleepless nights and anguish. Am not greedy, not against taxes, just want what is just and fair, when I work 7 days a week for nothing and cannot pay my bills, nor comply with mandatory Council Fire Orders. Paid for all of mum’s care with zero tax concessions, could not access a homecare package, spent all my super and shares.

Have had nothing in my bank account since 2015, work tirelessly managing every penny to hang onto my parents legacy, not from extravagant living.

If you don’t ask, you don’t receive!

5.4 - National Carers Card

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We need a National Carers Card so all carers 1 in 10 are acknowledged for what they do for our community.

This National Carers Card should provide all carers in Australia with discount movies, theatre, transport and medicare only bills with doctors appointments.

This would make a gigantic difference to every single full time carer, who sacrifice everything to look after a loved one.

We are saving Australia alone per annum for all our selfless unpaid care $77 billion. Every carer should be acknowledged and recognised for what they do, with a National Carers Card.

People don’t understand what it is to be a full time carer for an elderly parent with Dementia; they think we are having a holiday. We work so very hard taking care of them and suffer extreme exhaustion and burnout.

Did you know 800,000 Australian carers are on a pension and 2 million other carers are not. Did you know 1 in 10 Australians are carers?

For those who do not receive a pension there is a carers allowance that is means tested, you are not entitled to it if you earn over $250k pa, it’s a very well kept secret.

It is $63.50 a week which is a $1 an hour for taking care of a loved one, 7 days a week

The Government cannot destroy our assets, expect us to pay for everything, give us no help, nor tax concessions, when we have given up our careers, spent all our super, to take care of a loved one, when we are close to 60 and cannot return to our former careers.

We need a holistic approach to this 21st Century dilemma, as our population ages with so many living so much longer into their 90’s and needing full time care, this will continue to affect more of the population

We cannot destroy the caring generation who will be left with huge health problems and many more dependent on the welfare system because the gigantic impact and long term consequences were not considered.

All carers are suffering with financial worries. This National Carers Card should provide all carers in Australia with discount movies, theatre, transport and medicare only bills with doctors appointments.

Stress of carers is enormous without the additional financial worries. You have to think for them, run their whole lives.

Carers are saving the country $77 billion a year by looking after their loved one (s) because they have given up their life, their career and made many sacrifices including using all their super to pay for bills and living expenses.

A few ask me when am I going to get a job? I have never worked so hard in all my life.

Few have any understanding of how hard it is being a full time carer unless they have lived it too.

Mum could do nothing for herself, not even turn on and off the tv, turn on and off the lights, I had to shower n dress her, she was double incontinent, it’s relentless, 7 days a week.

Mum cannot remember how to put her makeup on. She cannot dress herself if she does, puts them on back to front, on top of her pyjamas, all mixed up.

It wears you out being so patient. Answering the incessant endless repetitive questions. It absolutely drives you nuts

You do become resentful, carers are always tired, always late, always come last. We have no life of our own.

Overwhelmed, we feel like the walking dead, being a carer sucks the life out of you.

I am too tired to cook, to ring my friends, to go out as I am constantly worn out. By the time you do all the looking after. There’s nothing left for you to have a life. It only gets harder as time goes by as they deteriorate. At times am too tired to sleep at night.

Feel like it is contagious, my words become muddled up.

We need greater awareness, recognition, compassion and understanding.

Thank you for signing this petition to help all carers in Australia and create a National Carers Card

If you have not signed this petition could you be so kind to sign it.

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

Thank you

National Carers Card

This should be provided automatically with every weekly carers allowance.

Did you know 800,000 carers are on a pension and 2 million are not.

To provide like a seniors\pension card, discount, movie, ballet and theatre tickets, public transport as well as bulk billing for all carers medical expenses.

Must be called a Carers Card, so carers have community recognition

This would be a small recognition for all the many sacrifices and selfless care every full time carer provides 7 days a week.

A companion card is NOT a rest for a carer. Taking a dementia sufferer to the movies is misery for a full time carer, as they ask incessant questions, cannot follow the story and you do not have a break.

A letter from the Federal Minister for Aged Care, stating carers can apply for the pensioner card for discounts, this should be automatic when provided with a carers allowance and called a carers card. Why can’t this be done now ???

5.5 - Assessments by ACAT - no age limit - Australia

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ACAT Assessments - no age limit

ACAT assessment not limited to over 65 years of age. Sadly more young people are diagnosed with dementia. If someone is unwell and needs assistance they should be assessed regardless of the age and illness

Carers should not be killing themselves caring for a spouse who is too young for ACAT, not mentally ill enough for ACAT not disabled enough for NDIS not close enough to death for palliative care but ill enough and demented enough to require round the clock care

Need more programs for young onset dementia and reduce the stigma

5.6 - Carers Advocates

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Carers Advocates

Its so hard, every carer feels they are drowning and overwhelmed.

It it would be invaluable to have someone who would just call you, come see you, talk to you, (and listen!) and find out what you and your Loved One need to function comfortably and smoothly through the day.

Then organise the assistance carers need.

5.7 - Carers App

We need a carers app to help support all families who are looking after a sick loved one - where friends and families can assist

Create a Carers App to organise help with family and friends

Checklist of what things you need to set in place

Install disabled handles in shower

List of contact phone numbers

Link shopping list so others can do the shopping

Link to pay for shopping

Should be set up like a open diary with all jobs need doing

Meals and pick up appointments at school, doctor, coffee break, go shopping

Request for cooking, eg soup, salads, deserts, everyone gets tired of spaghetti bolognaise and lasagne

Every week need help to do this each Tuesday

Eg need assistance with washing, change sheets, clean home

Has capacity to list every morning need someone to Pick up kids 6.55am drop to school bus

Be able to send out reminders what needs to be done and what is up for grabs

What to Say Instead

Try these comments, instead:

  • Can I help by driving you to the doctor?
  • I’d like to come over and sit with your husband while you go out.
  • What day of this week works best to bring dinner over?
  • I’m praying for you.
  • How is your loved one doing?
  • Here’s a gift certificate for ice cream or coffee.
  • Would you like to talk about it?
  • How are you really doing?
  • Can I help you with the laundry?
  • I thought of you and would like to bring a care package. When may I stop by?

5.8 - Carers Hotline 24/7 Phone Number

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Carers Hotline 24/7 Phone Number

To access urgent assistance and assistance with Homecare Packages, other support services

5.9 - Carers Only Obudsman

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Carers Only Ombudsman

Carers Ombudsman, who can liaise with all levels of government throughout Australia, including Local, State, Territory and Federal Governments.

Exceptional Circumstances

At times Carers do not have guardian nor power of attorney yet do all the work.

At times carers stop other family members seeing dementia person needs arbitration somewhere to turn to

Carers are bullied by other family members

5.10 - Children must be included in the Definition of Carers

Children who are carers need to be recognised and supported with services

Children must be included in the definition of carers

We need to support all children who are carers, there are many services for children with cancer, but not for children who are carers, with young onset dementia, we must ensure children have fun in their lives and their childhoods not destroyed by being carers

We need children carer support programs like camp quality for kids who are carers

Livewire program like Starlight Program for sick kids. Need an online program for kids who are carers, where they can chat, where it is supervised and there are many fun resources for the kids. So they don’t feel so isolated.

Able to access Drivers License 6 months earlier

Able to have kids credit card linked to parent’s credit card, would make life so much easier

Lives of Australia’s ‘largely unrecognized’ unpaid carers the focus of new campaign, 3-legged challenge 10 February 2019 children who look after their parents

https://amp.abc.net.au/article/10778824

5.11 - Create a Carers Affairs - like Veterans Affairs

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Create a Carers Affairs - like Veterans Affairs

To provide and protect all carers who have sacrificed their lives and saved the country $60 billion dollars per annum for all our unpaid care

Many older women are becoming homeless

Why, because they are the ones that do most of the caring, sacrificing everything and we must protect them. Women over 55 years of age, fastest growing homeless people in Australia.

https://www.afr.com/property/women-over-55-years-now-the-fastest-growing-homeless-people-in-australia-20180820-h146r2

5.12 - Disabled Parking Cards use by all Carers

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Disabled Parking cards use by all Carers

All carers are allowed to use their disabled parking cards with zero consequences, they have sacrificed everything and are allowed to save a few dollars by not paying for parking. They rarely go out, too tired from being a full time carer.

Carers can use their disabled parking cards without their loved ones on parking meters and parking zones of one or two hours, to save a few dollars, when we are saving the country billions of dollars pa for all our selfless and unpaid care.

5.13 - Employment Strategies

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Employment Strategies

Cancer diagnosis, some are there to help.

Should be the same for Dementia Diagnosis, it is a terminal illness with no cure

Understanding re endless phone calls, they cannot remember. I am an only child no other family, so mum would ring me three times in 5 minutes at work to ask a simple question.

They are frightened, they have no short term memory. Employers need to understand their brain is slowly dying and is no longer working. Everyone’s journey is unique.

Even if there is a large family, it usually always falls onto one member of the family and the rest do nothing to help in any way, except criticise. Do not assume they have lots of help, because they rarely do. I am an only child and had no other family, so had to do everything. We have to take over their finances, run their lives and it is absolutely exhausting.

All dementia carers need flexible work practices, where they can reduce their days of employment as their loved one declines. Every person with dementia declines differently and it affects them differently. There are over 100 types of dementia.

Where they can work from home, if need be, as their loved one is having a bad day and they need to be cared for

Career breaks like maternity leave but longer so they can return to their employer, very hard to return to their career when over 50 years of age huge ageism and this must stop.

Carers can return to work part time, as they are exhausted from being a full time carer.

Impossible to find part time work

Assistance returning to their careers after being a full time carer

Greater understanding and respect for all full time carers who have sacrificed everything to take care of their loved one and are able to return to work if they choose.

I was forced to resign the Friday before Christmas in 2014 due to a horrible boss, due to my mother’s dementia, this should never be allowed

Ageism alive and well, says one woman who applied for 200 jobs abc 22 Nov 2019

http://amp.abc.net.au/article/11724368

More carers’ leave may help Australians look after elderly parents and stay in work

https://womensagenda.com.au/latest/more-carers-leave-may-help-australians-look-after-elderly-parents-and-stay-in-work/?fbclid=IwAR1h04v8rDz9j-7hGMH93VPTu88PIQ5VERfWs7nTKnp5068HW1Rgk-7uRrY

5.14 - Euthanasia we should have a choice

No baby boomers want to go into an aged care facility nor be a burden for their family, children or community.

Euthanasia

We want to have a choice prior to being diagnosed with dementia

No baby boomers want to go into an aged care facility nor be a burden for their family, children or community.

We have watched our parents suffer with dementia with lack of care, services, support and respect

Hawaii end of life choices

https://www.youtube.com/watch?v=4y7nYw0yhgI

We’re honored to work with Richard Chamberlain to support Hawai‘i residents in advocating for autonomy at the end of life. http://www.compassionandchoices.org/i… In passing the Our Care, Our Choice Act, Hawai‘i authorized medical aid in dying, another compassionate option for the end

https://www.compassionandchoices.org/in-your-state/hawaii/resources-for-patients/

Euthanasia Dutch Court expands law on dementia cases 22 April 2020

https://www.bbc.com/news/world-europe-52367644

5.15 - Every Location should have a cheat sheet of their carer services (Update)

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5.16 - Funding provided for all local support carers groups

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Funding for all local carer support not for profit groups is maintained

All carers around Australia have access to this invaluable support, where they learn from others and do not feel so isolated and alone which every carer feels

5.17 - Homecare Packages

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1 Centrelink portal for your file to upload all your financial documents

Able to upload all your financial documents onto the Centrelink portal and see what is missing so you are compliant and can be quickly assessed for a homecare package.

Once registered for a homecare package you are not removed from the list, even if paperwork is lost. You remain in the queue from date of application registration.

2 Costs of Homecare packages to be affordable and fair

Lvl 1 or 2 same costs as for lvl 3 or 4, need to encourage carers to sign up for homecare packages .

The unjust cost is a gigantic deterrent for carers to sign up for lower level homecare packages.

Prorated amount 1 or 2 hours a week should not be $200 per week.

It needs to Affordable and fair. Cost Graded per lvl to make the financial journey easier .

Early intervention homecare would be invaluable for all carers

3 Homecare Providers

Are regulated and have a cap on what they can charge a client for caring in their home.

At the moment some charge $90 for half an hour for a carer to shower and dress a loved one at home.

4 Maintaining consistency for dementia patients with the same carers

Consumer model where consumers can keep carers, no matter which provider you take up homecare packages.

Established Brokerage for home carers into another homecare package.

Providers work together and ensure training is consistent with all staff

Should be an incentive to work together break barriers down

5 No waiting lists for Lvl 4 homecare packages

It is essential to provide support services when they have stopped walking

For every ACAT Lvl 4 Home Care assessment, there should be no waiting lists, we have worked hard all our lives, paid our taxes, it is hell on earth doing all the caring and not able to access any assistance, zero tax concessions, nor have a weekend off.

It’s relentless - 7 days a week job and usually always falls on one family member.

5.18 - Hospice and Palliative care at home

Everyone deserves the best of care when they are dying, not just cancer patients

When they are dying and cared for at home - can be admitted to a hospice of have palliative care at home

Able to admit them to a hospice, as a lvl 4 homecare package is just not adequate care and every one deserves to pass with dignity and the best of care.

Our Elderly parents, worked hard all their lives, made many sacrifices and made this country what it is today.

Everyone deserves the best of care when they are dying.

Why is it, if you are terminally ill with cancer you are able to be admitted to a hospice, the rules need to consistent for everyone.

Elsewhere in the world, you are able to admit them to a hospice where they are provided with the best of care

Attended Parliament House on Thursday 21 November 2019 and am delighted Dementia Australia have taken up this battle at their annual Parliamentary Friends of Dementia.

5.19 - Maintain consistency for dementia patients with the same carers

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Maintain consistency for dementia patients with the same carers

  • Consumer model where consumers keep carers, no matter which provider
  • Establish brokerage between service providers
  • Service Providers work together and ensure consistent training for all staff

5.20 - Mandatory Online Dementia Training for all Public Servants

There is huge ignorance in the community re dementia

All public servants to do mandatory online training on what is dementia and what it means to be a dementia carer and how to take care of a loved one at home with dementia.

To create far greater awareness, compassion and understanding in the community.

5.21 - Mandatory Training for all local Doctors on Dementia

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All local doctors GP’s are trained on dementia and services

My Aged Care homecare packages and ACAT

5.22 - Paid Carers should not be casual be provided with lunch allowance

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Carers who provide a couple of hours respite care per client per week for full time carers eg through St Lukes through the CHSP

Carers must be paid more and have a lunch allowance included, as they are expected to take clients out for lunch.

They should be permanent staff so they receive annual and sick leave, rather than being a casual with no benefits.

We need to encourage young people to have a career in aged care.

Client managers should no longer receive $500 per client

5.23 - Rehab specialists trained in looking after Dementia Patients

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Access to Rehab for Dementia Patients

Rehab staff are trained to look after patients who have dementia.

Right now it is impossible to access Rehab for someone with dementia

5.24 - Respite care - able to book in advance for holidays, tailor to family needs

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Respite care - able to book in advance for holidays, tailor to family needs

From date of diagnosis, all carers are entitled to respite care and to accumulate it like sick or annual leave, rather than the entitlement expires every 12 months.

Commonwealth to build and fund respite centres across the entire country.

Centralised date base listing all respite centre vacancies enabling break planning for the first time.

When mum went into respite care, should be able to keep her carers, have no other family, important for her well-being to maintain consistency, continue visitations, continued social interaction,

Need to be exceptions to the rules, broke my wrist 9 weeks respite care not enough, cannot lift anything heavy for 3 or more months. 9 months later still in constant pain, would not have been able to look after at her home

https://www.abc.net.au/news/2019-10-25/research-shows-benefits-of-respite-care-on-aged-care-sector/11635246

5.25 - Shopping Trolley for adults

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Shopping Trolley

We need these in Australia, they are in every state in America 😉🙏🌟 I contacted my local IGA and suggested they should look into these as we need them here too.

As our loved ones decline with dementia, they are not as mobile, and these world be invaluable for all carers.

5.26 - Stop Charities ringing for Donations

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Stop charities ringing for donations

Many used to donate regularly to various charities, but with the diagnosis of dementia, can no longer afford to donate, particularly once given up career.

Drives every carer nuts, as dementia patient say yes to everything and then we must send everything back. We have more than enough to do, than worrying about mail and items to be returned.

In the UK they have stopped charities harassing for payments. We should be able to register to stop charities calling on the phone.

https://www.dailymail.co.uk/news/article-3083859/Shame-charities-drove-Olive-death-Organisations-exploited-pensioner-s-kind-heart-admit-sending-begging-letters.html

https://www.theguardian.com/society/2015/sep/23/charities-ban-fundraising-public

5.27 - Superannuation for all carers

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**
Superannuation for all carers who have given up their careers**

Carers to be treated as government employees and be paid super at a rate of 12% of their last full time employment salary.

This should be entirely funded by the government

5.28 - Tailor homecare packages to individual family needs

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Tailor homecare packages to individual family needs

  • Should not be the same price for a Lvl 1 and Lvl 4 homecare package. Each level different price
  • Lvl 4 homecare package completely inadequate for palliative care

5.29 - TV Advertisements like they did with Aids and brain donations

To create greater awareness, understanding and compassion not just for those suffering with dementia but all full time unpaid carers

TV advertisements like they did with Aids

Encourage donation of brains for research, announce how and where

We need to educate the community on dementia as there is huge ignorance.

So when there is a diagnosis of dementia, most rush to help like cancer, instead of all disappearing.

Like Air Crash investigations, this is how not to do it and this is how you should do it.

Eg don’t correct them, just agree as you can never correct nor argue with someone who has dementia.

Listen to their repetitive stories,

listen to the same questions they ask repeatedly, like they did, when you were a child.

Their brain is broken and they have no short term memory.

Had I known we could donate their brain for research and where, I would have gladly have done so, to help find a cure and treatment for this horrendous terminal illness

5.30 - Update forms with employment details to include full time unpaid carer

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On all forms ‘are you employed’ should include ‘full time unpaid carer’.

Full time carer should be included, under employment details, instead of retired, unemployed, full and part time employment, to create greater awareness and service for full time unpaid carers

5.31 - Video training at Carer Support Groups on Personal Care

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Video training at Carer Support Groups on Personal Care

Training for dealing with incontinence, it’s a major problem, when not properly done can lead to UTI’s and subsequent hospital admission.

Instead of learning by trial and error

5.32 - Weekly Carers Allowance should be the same as unemployment benefits

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Weekly carers allowance – should be higher

$63.50 per week, $1 an hour

Centrelink legislation to be updated so all carers are able to backdate their allowance, to when they gave up their career.

There should be a 6 week grace period of time after the death of a loved one as there are huge expenses. $372.00 is not a huge amount of money but will help every carer.

Centrelink legislation to be updated so the Carers Allowance is connected to their Loved One who has dementia, so when their loved one passes, their Weekly Carers Allowance automatically stops, so there is no debt that carers are harassed for.

Just because Centrelink advised you when you received the carers allowance, you have to advise them, how many noticed this? You are so frantic trying to look after a loved one, you don’t have time to read the fine print.

We had no debt, when mum was diagnosed in 2013 and I was in full time employment

I have had the debt collectors after me for over payment of my carers allowance by $372.00, have appealed this decision, as I never received mum’s homecare package of $55,000 pa because Centrelink lost the paperwork 4 times. I refuse to pay it. There are so many carers who never received a homecare package and then are harassed for the reimbursement of their carers allowance.

Because I want this legislation changed for everyone so it is consistent, fair and just.

My mightiest sword the pen has worked its magic again. 2.30pm 27 August 2019.

Had a call on behalf of the Federal Centrelink Minister the Honourable Stuart Robert who I wrote to last week regarding my outstanding carers allowance debt of $372.00

They assured me, with the Administrative Appeals Tribunal in September, this would not stop me from leaving the country to attend a world dementia conference in Rome. As this was worrying me.

I worked till midnight Thursday night and all Friday morning on my documents and evidence of my story and why this is so unjust for all carers. I attended the Administrative Appeals Tribunal 13 September 2019 re my unjust debt of $372.00 for my carers allowance over payment to appeal this debt.

Did you know financial hardship is not a reason for AAP tribunal to dismiss my debt of carers allowance over payment, it was irrelevant Centrelink lost my paperwork 4 times and Mum never received a homecare package of $55,000.

According to the legislation it is irrelevant I have paid for everything and done all the work, given up my career and because I have assets, I must pay it. According to the legislation I owe $372.00 the government.

I have worked 7 days a week for nothing since 2015, cannot pay my bills and do not live extravagantly. Am drowning in debt when I have sacrificed everything.

I told the judge my story, my dream to change the world and to speak at the United Nations in New York as an advocate for all carers. She wished me well and said it was a privilege to meet me.

The tribunal declined my appeal received their letter 18 Sept 2019

Unless you have lived it, no one has any idea how hard it is to change adult pull ups and the poop goes everywhere. How hard it is to shower and dress them, when they scream as if you are murdering them. How hard it is to answer all their relentless repetitive questions. As they decline you have to pick up everything, they can no longer do anymore. Bureacrats all need to spend a week with a full time carer looking after their loved one, who does not have a homecare package and see what we do, dealing with double incontinence and their world of dementia, 7 days a week.

Until it happens to your family, no one has any idea how very hard it is.

I am absolutely livid, when I read on one of my dementia carer Facebook groups just now, if you receive a carer payment and your loved one has gone into full time care, you receive another 14 weeks of payments to help you adjust. Plus on the same post on Facebook “ I knew they paid another 14 weeks if they pass away”

This was no accident that I saw this post, meant to be, we need consistent just and fair legislation and rules for everyone.

This is criminal, cruel and heartless for those who only receive a carers allowance and have done all the work, paid for everything. Why is everything such a big secret?

19 Sept 2019 I have just written to AAT, RC and various politicians re my unjust debt of $372.00 am appealing the unjust decision

It’s outrageous when there is compassion for those on a carers payment who have made the heartbreaking and devastating decision to put their loved one into full time care, as they can no longer manage looking after them, or they have passed.

Yet there is none for carers who are organising a funeral and have sacrificed everything and done all the caring, when they could not access any assistance. It should be exactly the same and why is it not ? If I lose the next appeal and have no further avenues I will join the class action against Centrelink re unjust debts.

Carers are saving this country alone $60 billion pa and we are hounded for repayments of a carers allowance.

How much money has the government wasted on debt collectors, the tribunal, the paperwork preparation and letters over my unjust debt of $372.00 ????

Far easier to go after the vulnerable little people, as most will just give in, pay and have no voice

If this was the private sector, they would not be demanding payment when they lost the paperwork 4 times and never received any assistance !!!

Yet so many companies and high end individuals, don’t pay any tax, so many don’t pay any land tax. The bureacrats don’t want to change anything, because that will mean they will have to work !!!

I have appealed again this decision

I wrote again another furious letter and said I would never pay this unjust debt and if need be would join the class action against Centrelink. The Litigation Department of Human Services rang me Friday 8 November 2019 and said they are waving the unjust debt of my carers allowance of $372.00 am thrilled.

5.33 - When we cannot access a homecare package, we must be able to

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When we cannot access a homecare package, we must be able to

Must be able to claim tax deductions for all care expenses including pull ups, paid carers, equipment – eg wheelchairs, activities with local seniors group

Must be able to claim hardship and assistance with our tax liabilities including NSW Land Tax

6 - Example Page

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