Being diagnosed with any medical condition is scary. Dementia can be particularly confronting as it can have a slow progression over a long time.
Dementia is a complicated condition, as symptoms are varying and different for every person with a diagnosis. On average, it is expected that a person will live with dementia for around 10 years after a diagnosis.
Dementia affects more than 400,000 people in Australia. That’s a number that’s expected to grow as baby boomers get older and live longer than all other previous generations.
To better understand the condition, it’s important to see the faces of those who are impacted – the people who are diagnosed and those who care for them.
On Four Corners this week, there was a special episode dedicated to getting to know the human faces of dementia in Forget Me Not: Australians living with dementia.
Here are 3 different stories, each with elements that families with dementia can relate to.
Gary and Mandy as a married couple living in Christmas Hills. In 2001, Gary was diagnosed with a rare type of younger-onset Alzheimer’s, which is genetic in his family.
Gary’s mother developed Alzheimer’s when she was in her 50s.
“When she got sick, she said to me ‘I hope you don’t get this’, when I asked her why she was saying this, she explained that her dad had the same thing, and his two brothers, and their sister, their mother – it went on and on,” explains Gary.
He was diagnosed with a genetic test more than 16 years ago, but has only started early retirement recently to spend more time with his wife.
“I’ve always wanted to know, because I believe you can plan your life better…like if you were to get sick you could change your thoughts about what you were going to do and when you were going to do it.”
It was important for Gary that Many understood what was going to happen to their lives, and even gave her an out.
But Mandy didn’t take it, “I was madly in love with him, and there was no way that I was going to change my mind”.
“What keeps me going, I think, is just love. He’s my best friend. And I made a commitment to cherish him and care for him. I really want to see that through.”
“I’m hoping that they find some sort of drug to slow it down or even stop it. I try to think positive like that so it doesn’t make you feel all ‘doom and gloom’ all the time,” says Gary, “that’s what I’m doing anyway”.
Brian’s progression was slow, “I can’t put a date on when it became difficult”.
“It’s very difficult coming to the realisation that you can’t do as much as you used to be able to do”
Brian was an academic. He was a Principal by the age of 30 and became a District Inspector at 37. He then went on to manage school support centres, and was in charge of over 300 schools.
But then he started to give up things he was passionate about. He gave up rotary, tennis, he was reluctant to continue volunteering and stopped accepting invitations for places.
His wife, Heather, was the one to note the changes in Brian, “I was noticing that he was standing for ages in front of his wardrobe not knowing what to put on.”
On particularly bad days, she’d quietly take them out and put them on the bed.
“Heather keeps me going,” says Brain, “I feel very guilty that I am the cause of dampening of her enthusiasm”
Heather explains that they had three “awful years of tensions, and friction and a feeling of absolute hopelessness”.
When times get tough and Brian feels bad about himself and the burden he is to his wife, Heather comforts him “I just remind him that the diagnosis was our diagnosis, that it’s not just him. It’s something in our life that we need to deal with.
“I remind him constantly that he is Brian Fischer who happens to have Alzheimer’s, he is not Brian Alzheimer’s. Because Alzheimer’s could take over your whole life if you let it.”
Around 12 months ago, Brian was getting so frustrated that he started to become physically aggressive, which was “just not him”.
Brain is still embarrassed talking about the one time he hit her, “there was I, hitting the person I love, my best friend. She puts herself out so much to help me”
The diagnosis has given the couple a new outlook on life. “my diagnosis has helped me come to grips with some of the things that I’ve always put off for tomorrow…I want to spend more time with my grandchildren, I want to travel around Australia, and I want to tell my wife that I love her,” says Brian
Suxie is 58 years old and last June she was diagnosed with early-onset Dementia.
“About three years ago, I started to notice little things…language, words weren’t there,” explains Suzie, “at work I was having trouble with technology and I would notice I had lots of spelling mistakes”
The first time she went to a doctor, they dismissed her symptoms as menopause.
But after two years and still not having any answers, she kept looking – after which she was given a referral to the Cognitive Dementia and Memory Service.
To make a diagnosis, clinicians tested her memory – not just her straight recall, but also her ability to manipulate information in her mind, as well as language testing.
There’s a whole team of doctors that help Suzie, including neurologists, GPs and various allied health people.
“I’ve told people that I love dearly that unless they want a good slap, don’t ever refer to me as a dementia sufferer, ” says Suzie
“I’m not ‘suffering’ with dementia I’m just another person diagnosed at a younger age and there are a lot of people out there like me.”
“I have a bucket list. I want to travel more, I want to spend more time with my children, I want to embrace life and I don’t want to forget the people that I love,” says Suzie.
To watch the full episode of Four Corners, click HERE