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the dementia carer's world

BEING AND BECOMING

A CARER

BEING AND REMAINING

IN CONNECTION

SOCIAL NETWORKS AND SUPPORTS

DAY TO DAY PRACTICALITIES

RESOURCES

Charles was born in 1930 in Randwick, Sydney but he grew up in a mining country on the edge of the Great Dividing Range west of Sydney. My grandad loved to play tennis and cricket, as his father and uncles did when they were young.

When he got older he started working as a carpenter in the quarry run by is Dad.

In 1976 Charles decided to buy a farm. This was about a 500-acre farm, with lots of bush, rocks and creeks. When they started off, it was road building, fence making and family fun. They then started building the house and painting it. Charles got lots of sheep, cows and horses.

My Grandad’s family loved going to the farm on weekends and helping with sheering the sheep and looking after the other animals. The farm was the place to be.

When my cousins and I got older we started visiting the farm a lot. We had a hill called ‘Breakfast Hill’, where we would go up and make our scrambled eggs and bacon.

It was truly my Grandad’s happy place. Beautiful trees and plants brought magnificent flowers and birds. My Grandad would go out on the paddock and feed the horses or just have a walk around. You would be able to see birds all around. Lorikeets, eagles and more.

At night time the stars would just look amazing like massive diamonds thousands of miles away.

My cousins and I loved riding on the tractor to different places, we loved to have spas in the back bit of the house, and we all loved riding on my quad bike together.

We used to have Easter there all the time and the parents use to hide the eggs in the backyard, so we could go out and find them after. We used to make massive fires out of all the wood we could find and stay up late. We had an awesome time at a winery in Mudgee, where we sung the happiest birthday to Grandad when he turned 80.

Going down to the creek was the best. We had to walk down a steep slope and we had to make sure we didn’t fall. We use to jump off this massive rock into a little pond. Then along came the horses, Taffy (Star) and Nutmeg. I called Taffy ‘Star’ because she had a massive star on her forehead. They were the prettiest and sweetest horses ever. Also, I remember one time my cousin found a witchetty grub and we cooked and ate it – it was so gross! Nutmeg eventually died and so did Taffy (Star). We had a little hill we buried them on.

'Shut up and listen'

In such times Sarah (Phil's assistance dog)  will nuzzle into Phil, giving him affection until he becomes .....

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Through Sarah’s (Phil's assistance dog) presence people are more receptive to understanding.....

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The couple had no idea what the diagnosis meant and thought, ‘that was it.....'

Or

Faced with GP after GP reluctant to work with him....

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'I felt like a bit of a goose'

READ MORE

But all of this changed after my Grandad sold the farm. The last time we ever went to the farm was sad and we cried when we left. But we knew my Grandad would benefit from the money he was receiving. That meant no more walks down to the creek, no Easter egg hunts, no fire on a beautiful starry night, and no more adventure. It was very hard to say bye.

We kept some things from the farm. Like a chair that was my Grandad’s favourite, and a sign which was at the front of the gate which read ‘Kamilaroi’.

A few years after, my /grandad got told that he had dementia. Which is memory loss – meaning it affects your brain, so you don’t remember things.

When we found out he had memory loss we got a bit sad and shocked because we didn’t know if he would remember us. The first time I went to see him after we found out he had dementia was a bit sad. We walked in and said ‘Hi’. He said ‘Hi’ back, so we weren’t sure if he remembered us. Turns out he had no clue who we were. He started to get worse and worse, so he started taking medication which would help with his memory, but we think (my family and I) that it didn’t help. So, he got new medication which I think is helping. I don’t really know how it’s supposed to work. I didn’t really see him that often because he lives in Sydney with my step Nan after he got divorced with my nan. My step Nan is an amazing person also.

My Grandad is a lovely man but does get furious and worried because he doesn’t know where he is most of the time. One time my step Nan and my Grandad were at her work. She let my Grandad go for a wander to get some fresh air because he said he needed some. So he went outside like usual but then he realised he didn’t know where he was. So he was walking around for a bit then went out of the property and wandered down the street on the side walk. He walked far away.

Luckily some people from a local medical research centre, who were studying the brain, saw him and could tell he was lost. So, they picked him up and took him to a nearby café, where the police came to look after him until they could contact my step Nan and she could take him back home. Just to think, he could’ve been run over, or he might have fell and no one could’ve helped him! Everyone was worried!

The last time I saw him he didn’t seem any better and, from my perspective, I reckon it’s just getting worse.

So, what happened that day was he came over to my Nan’s house to visit her while my cousin from Queensland was over. We went to the park and played cricket and had heaps of fun through the day but when it came time for him to leave we took him out the front and he saw a red car. My step Nan had a red car, so he though she was picking him up – he wanted to go into the red car. But he had to go into my Mum’s car so she could take him home! They waited outside for what seemed like about twenty or thirty minutes. He didn’t want to go into my Mum’s car! When I tried to say goodbye to him, he just pushed me away. I felt really upset because he used to love giving me big warm hugs and kisses but now it seems like he doesn’t care anymore … but I know that’s not the case.

He eventually got his way and went back inside, closing the door on my Aunty and refusing to let her in. My cousin, my sister and I went out to the backyard, so we wouldn’t get in his way. My Mum and Aunty came around the back of the house to see if the back door was open. My Grandad had locked all the doors in the house – he slammed the doors shut!

Eventually he calmed down and opened the doors for us to come inside. Then my Mum rang up my step Nan to come and get him! She came and got him into his own red car, and they were out of there on their way to their home.

Me and my Grandad use to be close. He used to love giving me hugs and kisses. He’s not like that anymore, he now has memory loss which causes him to forget who I am.

I don’t care if he has dementia and doesn’t know who I am.

I love him to bits and that’s all that matters.

Dementia Reframed

PO Box 807 Petersham
NSW 2049

Phone: 0418 220 888

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