Going to Stay At Home is a one-week residential course developed by HammondCare for people living with dementia and their family carers. It's designed to help enable people with dementia to remain at home for longer.
The program was trialled in Sydney, and it will be taken to the Netherlands later this year.
Brian and Karen Johnson went along as participants during the trial, and Karen says it was Going to Stay At Home that empowered her to keep Brian at home until the very end. This is their story.
Brian playing for Warrington in the UK.
For a young Brian Johnson, the world was his oyster. Dux of his school, incredibly good at maths and science, he was also a star sportsman.
It was while at high school that Brian caught the eye of a young woman. “He was the best looking guy in the playground and he hung out with all the geeks!” laughs Karen, who ended up ‘going steady’ with Brian at age 15 and would be remain his soulmate all his life.
The couple graduated from high school and Brian went off to University to study science before deciding to transfer to teaching. Committed to each other, they were married while Brian studied to become a P.E. teacher.
But during his final year at University Brian was invited to play professionally for the St George Dragons Rugby League club. He leapt at the opportunity and played six seasons as a full-back, winning the premiership in his first year. Brian was a crowd favourite, much loved and with buckets of talent.
Privately, during his time with the Dragons, he and Karen struggled through round after round of IVF. So when Brian was approached to play for Warrington Wolves, a rugby league team in the UK, they decided to have a break from it all and take up the offer. “We moved for one year and stayed 10,” laughs Karen.
While in the UK Karen and Brian adopted two beautiful boys – the crowning joy of their lives together.
Eventually the family moved back to Australia, with Brian coaching a number of footy teams before joining the Australian Institute of Sport as head rugby league coach.
But it was in his middle years that Karen first noticed something wasn’t quite right with Brian.
“I remember he was writing a coaching textbook and it all fell by the wayside a bit. I remember thinking, oh well, if he’s losing interest that’s ok, he can slow down. It never really occurred to me that something might be wrong. I just rolled with it.
“He also got really bad at golf and it made him so cranky he gave it up. I refused to play with him because he’d be swearing and carrying on out on the golf course. But again, I just rolled with it all.”
Although he didn’t tell Karen, Brian himself knew something was wrong, and had started to see his GP more frequently.
“He later told me he felt like he was walking through a fog all the time,” says Karen. “He couldn’t remember the names of Rugby League moves that he’d created, and if he was putting out witches hats for training exercises he couldn’t remember how to place them. I thought, oh he’s just getting old, but now I look back and put all those things together. It had been going on for 10 years.”
Brian received a diagnosis of Alzheimer’s Disease in 2010, aged 54-years-old.
By the time Karen first heard about the Going to Stay at Home program she says Brian was 56 and she was caring for him full-time at home without any help. His dementia was worsening, and he was starting to be unable to eat with cutlery.
She heard about the program from Community Gateway, a case management program based in the Illawarra. They told her HammondCare was offering people with dementia and their carers the opportunity to come and live at a cottage in Miranda for 7 days and be equipped and enabled to keep their loved ones at home for as long as possible.
Karen and Brian attended Going to Stay at Home as part of a Younger Onset Dementia group. “We were the first group to arrive with bottles of wine, I believe,” laughs Karen.
She says being with a group of people going through similar struggles was one of the best things about the program.
“It was comforting to share our problems, solutions and experiences. It really, really helped knowing we were not alone and that we could spend very normal happy times with other people despite coping with challenges.”
For Karen, Going to Stay at Home was more than an opportunity to get some advice.
“It made my role as carer for Brian seem real and recognised as worthwhile – not just the next stage in being his wife. Instead of fumbling through the changes in his personality, abilities and behaviour it showed me what to expect and gave me strategies for dealing with the changes.”
She says it wasn’t until a nurse ran a session at Going to Stay at Home that she really understood Brian’s everyday abilities would change dramatically in the future.
“I thought he would carry on as usual but just forget who I was. I thought all the things we do were instinctive and once learned never forgotten. The practicalities of being able to use the computer, mobile phone, the television, keys, door handles, books, coat hangers, cutlery, taps, toilets, the washing machine, pegs, garden tools, shoe laces, etc. – who would’ve thought that was linked to memory!”
She says also benefitted from the sessions aimed at equipping people to advocate.
“I learnt where to get help, which government department to contact for what.”
Sadly, Brian passed away from Alzheimer’s at the all too early age of 59, in January this year. Karen has lost the love of her life, and is coming to terms with life without Brian. But she says, she has no regrets about keeping him at home, and it was partly due to Going to Stay at Home that she continued caring for him until the end.
“By the end of the course I felt empowered to take on the challenges of caring for Brian at home,” says Karen. “I am sure that if I had not done the course I would have listened to all the people telling me it would be too hard.“I cannot imagine how hard life would have been for both of us if I had placed him in a home, gone back to work and tried to visit him every day. I would have had to sell our house to pay the fees, I would have missed him terribly and he would have been miserable. I feel now that I did everything I could physically and emotionally to look after Brian. If I had placed him somewhere, I think I would now have great guilt and regret. I am so grateful for learning that I did not have to place him – that life is easier on the path we chose."