The Northern Beaches has 6,300 people living with dementia. We talk to North Curl Curl local Bill Yeates, who is living with dementia, and Avalon Beach’s Kay Hughes, a carer, about ways to face the disease.
Four years ago, Bill Yeates was diagnosed with younger onset Alzheimer’s. He was just 59. “It was devastating. I sometimes refer to it as a death sentence,” he says.
The North Curl Curl resident, who was a high school deputy principal at the time, had seen his father die of the disease. “(As his carer) I’d already seen firsthand what this disease does, and witnessed the cognitive changes in behaviour and personality which occur through each of the stages,” he says.
“So any dreams, aspirations, and hopes that we had as a family for the future were just simply gone.”
Bill first realised something was wrong when he struggled to remember the names of his students. As someone who was gifted with a photographic memory, he knew there was something wrong.
Once diagnosed, Bill was ‘shell- shocked’ and retreated socially. “I allowed in the darkness to surround myself. I put on weight, I started to drink…all the things that were typical.
Bill revitalised himself after his diagnoses, learning to surf again.
“I knew what was in in store for me and my family and I just simply did not cope.”
It was when some friends invited him on a trip to Japan that Bill had a life-changing moment. Initially seeing the holiday as his ‘last hurrah,’ it was while meditating that he decided he would fight – and not succumb to – the disease.
“I remembered that my father always taught me that people suffer adversity in their lives,” he remembers, getting emotional. “And that everyone stumbles. But what makes the difference is what you do when you stand up. He taught me you have to accept things that you cannot change.” After consulting with his twin brother, who does not have the disease, Bill decided to embark on a clinical trial into dementia which used an experimental drug to slow the illness’ progress.
“Dementia is a progressive neurological disease, which is incurable,” Bill says. “I’m not a gambler, but it’s probably the biggest risk I’ve ever taken in my life. And it worked.”
The drug produced ‘encouraging’ results for Bill, and he believes his symptoms have improved since taking it. The drug is still being tested and is ‘years away’ from commercial production. He emphasises that while Alzheimer’s is incurable, there are things that can be done regardless of drugs which may help change the trajectory of the disease – a mission he is now making his life’s work to spread far and wide.
Bill volunteers with sector advocate Dementia Australia, and has created a ‘tree of awakening your positivity’ to help those with dementia and their carers. Tips include eating well, getting proper sleep, regular exercise, and being socially engaged.
Yeates Neuro-Cognitive Training Program run by Empower Physio 3
At its core, Bill advocates ‘change your self-concept’. “I found that when I was diagnosed, my self-concept was just completely destroyed. My view of life was gone. So I needed to rebuild it.”
Bill decided to return to surf life saving, but found that Alzheimer’s had weakened his gross motor skills. So he undertook neuro-cognitive training to re-train his brain.
“One of the messages there is for people diagnosed with Alzheimer’s disease is to get a psychologist, dietician, or an exercise pathologist to design programs that’ll help you manage this disease,” Bill says. Social engagement and ‘giving back’ to the community are also crucial, he says. As is having a purpose in life and reinventing yourself if needed.
Bill now competes in masters swimming at an international level, a goal he developed to revitalise himself. But he says: ‘you don’t have to mimic me’.
“Look at your own strengths, your own weaknesses, your own experiences, and try and create a life that you value. Something that will get you up in the morning and sustain you.
“It is about showing people that you can still have a life. You just have to work out what works best for you.”
Kay Hughes | Carer
Kay Hughes was the full-time carer for her husband Richard who had Alzheimer’s for eight? Years before he moved into aged care. She found that the most important thing was not to lose herself.
“When someone who you love is changing and you don’t know why, that can be devastating.” With this sentence, Kay expresses what so many carers go through when their partners are given a diagnosis of Alzheimer’s and told there is no cure.
Kay describes the pain of becoming ‘invisible’ as husband Richard’s capacity to look after her needs slowly disappeared. She says every carer should ask this question: “To what extent is it reasonable for you to put your own wellbeing at risk in order to support someone you love to live?”
For her, the answer was eight years. “There seems to be an expectation that you, the carer, will just keep going,” she explains. “Sure you can have a break and have a bit of respite so you don’t fall apart. I’m wondering why we don’t support carers to continue to live a rich and full life through the whole experience?
Part of Kay’s therapy was to paint, including this portrait of husband Richard.
Kay sought out her own respite to deal with Richard, who at times required constant supervision. “I have no regrets because we had a lovely time together. But it takes its toll.”
Music and art were very therapeutic for Kay to ‘work through the emotions and the stages of grief associated with loving someone who has dementia’. Kay and Richard also did many activities together, like watching sunrises at the beach. “That kept us both afloat in a way,” she reflects.
Putting Richard into a care home felt like a “betrayal” and Kay could not stop crying at the time. But Kay says she is now happy because Richard is content – even though he does not know who she is when she visits.
Kay presents the songs she has written about her experiences with Richard at seminars organised by Dementia Australia. “My main aim is to touch carers so that they knew there is someone else who might understand a little of what they’re going through.
“You’re not alone.”
For more information, see Bill’s website www.awakeningyourpositivity.com and Dementia Australia dementia.org.au.
