Save Mum’s Memories

Joann was diagnosed with early onset dementia and has been a participant in Dr Eamonn Eeles’ clinical trial.

I was just 57 when I was diagnosed with early onset dementia. I had been working at a bank for ten years; and my manager was fantastic and really supportive of my diagnosis. She was very encouraging of me to continue working. I knew that I wanted to get out and live my life, before my memory was further impacted. I also wanted to leave on my own terms, so I chose to retire.

Financially, it was a significant impact on my husband, Les and I, because at the time we were a double income. After years of dreaming, we had just finished building our forever home and had only been living there for about eight months. We figured that we were going to work for another 10 or 15 years before we transitioned into retirement. And then that all changed….

We had to say goodbye to our dream house that we had worked towards for so long. We had to sell our beautiful home and move into a smaller place. It wasn’t ideal, but we had to make the tough financial decision, taking into account my diagnosis and what that meant for our future.

After a diagnosis of dementia, you do change your attitude to life. You live day-to-day because you don’t know what’s going to happen tomorrow. Nobody does, but I think I have a little bit of an insight into what the end of my life is going to be like. It tends to make you be as positive as possible about every day that you live, and every day that you can still do things.

I’m grateful that I was diagnosed early as it’s provided me with an opportunity to do lots of interventions that are thought to slow the progression of the disease. I exercise, eat healthy and look for ways to keep my brain active such as jigsaw puzzles, word searches and even a couple of course on Auslan, Australian sign language. All things that create new neuro pathways by learning something new. I was only given the opportunity to implement these interventions as a result of medical research. Without the support of Dr Eamonn Eeles’ research, I likely wouldn’t have been diagnosed this early, and I’m sure that my story would have been different.

Currently, I enjoy volunteering at RSPCA for four hours a week which gets me out to meet other people who are like-minded. They like animals as much as I do, so that’s really good.

When it comes to dementia, the sad thing is that there is no cure. We have to do the research and to do the research we need adequate funding. I agreed to be part of Dr Eeles’ clinical trial because I wanted to do something to help, to do my bit and try and help others. The way I look at it, this isn’t about me, it’s about the future and other people not having to go through what I’m about to go through.

Please give generously to The Common Good’s dementia appeal, this tax time. Every dollar donated will go towards research into the early diagnosis of dementia.

Tish’s Mum, Sylvia was diagnosed with Alzheimer’s disease at age 79. She was in the Cognitive Assessment Management (CAM) Unit at The Prince Charles Hospital for a month before going into a nursing home.

Mum was a nurse for many years and she actually nursed my Dad through motor neurone disease which was very sad for the whole family. He died at age 56 and Mum struggled to cope with his loss for many years.

When I look back now, I think one of the first signs of her dementia was collecting serviettes. She would take handfuls of serviettes when she was out anywhere and take them home. I wondered if this was going back to living through the Great Depression where there were shortages of things.

Mum would also become incredibly paranoid when we left to go out. She would always question herself, asking ‘Have I turned this off, have I done this, have I locked up properly?’ You couldn’t tell her, you couldn’t reason with her that everything was fine. I would constantly have to go and show her. As her dementia progressed, she would want to recheck everything a second, third and fourth time. That’s where I should have realised that something wasn’t quite right.

If you mentioned money, she would get very upset and uptight about it. She would say, ‘I can’t afford to give you any money. Everyone is taking my money’, which of course wasn’t true. As her dementia became more advanced, she started to hide her money.

As things progressed, she started to have trouble sleeping at night. I recall one night that she came into my bedroom. She tripped over the dog bed and fell. Mum was so bruised. After that night, I was hyperaware and had to sleep with one eye open. As a result, my own sleep started to suffer.

Eventually, it got to the stage where Mum needed extra care. I was so stressed that I even got shingles. I’m actually a fully qualified diversional therapist and have worked with dementia patients for nearly seven years.

To this day, I still feel guilt ridden for sending Mum to a nursing home as I promised I would never put her in one. In the end though, I simply had no other option. If I could have afforded it, I would have given up work to be her full time carer, but unfortunately, that just wasn’t possible for me. It is my hope that by identifying it early, other people don’t need to go through this cruel disease. Because it wrecks lives and breaks hearts.

We have to find a solution. Please give generously to The Common Good’s dementia appeal, this tax time. Every dollar donated will go towards research into the early diagnosis of dementia.