End of Life Care

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.