“My life has turned 360 degrees – out of workforce, no life partner by my side…”
These are the words from a man who is currently mourning the deterioration of his beloved wife, Sue, who has early onset Alzheimer’s.
In April of 2013, Sue was officially diagnosed with Alzheimer’s disease. The disease is debilitating and ruthless to say the least. With minor incidents unofficially dating back to about 2008, it was in March of 2012 that it all came to a head.
Ian is the husband of Sue. They met as 18-year-olds at a Chicago concert at the Myer Music Bowl in 1979 through mutual friends. They married six years later and have three children, now 23, 26 and 28 years old. Both passionate and much-loved teachers, Ian reflects on the many qualities that made Sue so well-loved.
“She had the ability to make anyone and everyone feel good about themselves, whether it was a close friend or the lady at the checkout at Coles,” he said.
“She was an incredible teacher… the control and captivation of the children in her classes was unbelievable, she made it all so much fun, but everyone knew not to mess with her.”
Dementia Australia state that dementia is the condition that will have the greatest social and economic impact on our time. With an estimated 104,622 Victorians living with dementia, services have never been in higher demand. Alzheimer’s Disease is often associated with only affecting older people. This stigma is very real for Ian and his family, with some of the closest people around him not believing him at first.
“Many very intelligent, world wise, knowledgeable people around me thought – oh well you know you will just have to get used to her forgetting things,” he told Dscribe.
“No – Alzheimer’s is a death sentence – somewhere between five and 10 years to live.”
A death sentence it is – and an absolutely horrific journey for all involved.
Ian has not only lost the woman he spent his life loving, but their three children have lost a great mum. Precious family time is now just memories as this destructive illness saw Ian have to quit his job to care for Sue.
Flashing back to 2008, minor incidents including backing into a neighbour’s car, forgetting to pick her children up, telling the same story, forgetting how to use things – like a key, and driving to wrong locations were just some of the warning signs for Ian and his family.
By March 2015, Sue’s short term memory was very poor. Up until this time, Sue had been driving Ian to work. This allowed him to monitor her skills but also provided Sue with a degree of independence. Teaching his beloved biology class, Ian vividly recalls looking out the window at 10AM one day, to see Sue waiting to pick him up.
“I went out at recess, she said ‘hi luv – I’ve come to pick you up,” he said.
“This got worse and worse, I would find at home post-it notes with times on it, she would write 12:01, 12:02, 12:07… 11:32, trying to work out the time to pick me up.”
Between this time and October 2016, Sue got progressively worse and slowly the ‘behaviours’ that are often associated with Alzheimer’s began. Remembered as a great cook, Sue lost her cooking skills, she began falling over, she began wandering away.
During this time, Ian got Sue to begin taking a plethora of drugs to control a range of behaviours which included agitation, anger, paranoia, sadness and hallucinations. The medicine had a trial and error effect, she had lots of great days – but her behaviours became more and more unpredictable.
These behaviours were the hardest thing to deal with according to Ian. Telling Dscribe about a week away to Merimbula, a particular incident made him feel the most vulnerable he ever felt in his life.
“Went for a walk on the beach – Sue started getting upset that the wind was cold so we began walking back to the cabin,” he said.
“She built herself into an angry state and was accusing me of abuse – I had to explain to others that she has dementia and would calm down.”
By 2017, the behaviours escalated and became more erratic. This included hyper ventilating, screaming the word ‘help’ at the top of her lungs, punching and throwing things at her family. So erratic, the family often considered calling the police and ambulance on numerous occasions.
By September 2017, the family was really struggling to cope. Ian said that by this time, she resembled the ‘energiser bunny’, running around all day and night screaming, trying to escape outside, yelling, becoming aggressive and violent, throwing things, hitting them and smashing glasses, refusing to go to the toilet or shower.
“It was tough for everyone.”
The hairdressing incident saw Ian’s daughter dying Sue’s hair. She hated the idea of grey hairs, so the family thought that it was only right to keep to traditions. After this, they knew they couldn’t do it anymore.
“My daughter dyed the hair, all was well and then it was time to wash it out,” he said.
“Sue refused to have it washed out… and started running around screaming, crying, hysterically yelling that she was hurting her,”
“We got her in the shower and she was screaming at the top of her lungs, she then punched my daughter repeatedly in the stomach until my daughter pushed her away and locked her in the bathroom.”
The days following involved searching for secure dementia facilities in the area, with no facilities catering for people with younger onset dementia. After a failed attempt at a care facility which saw the unpredictable behaviour continue, Sue was taken to an Emergency Department. The head doctor said that he had never seen a heightened state this bad, leaving her to enter a Psych ward in a nearby facility.
“Horrible but necessary,” Ian told Dscribe.
“She had a nurse one on one outside door, we were told to prepare for the worst,”
“She was incoherent and could not stand up… she was so drugged up and out of it, she couldn’t speak or hold her head up… very confronting stuff.”
Today, Sue lives in a dementia facility which supports her needs, she is on a drug regime which aids to ease pain and keep her calm. She still recognises Ian and her beloved kids, and although she is often incoherent at times, there are moments of cognition.
“Still loves chocolate and a back scratch/rubs,” Ian explains.
“These have an immediate calming effect, she still enjoys things that smell nice… like cream, perfume etc.… anything sensory really.”
Ian can’t praise this particular high care facility enough, they have worked to keep her calm most of the time, and most importantly, happy at times. So inspired, he begins volunteer work at the facility this week.
“She is surrounded by experienced trained mental health nurses,” Ian said.
“Even though Sue has no mental health illness, her dementia has affected her in a way that can be seen as almost psychotic sometimes.”
“It’s an ugly disease and affects everybody differently.”
But alarmingly, at 57-years-old, Sue is estimated to be about the second youngest in the facility with about six people being under the age of 65. Despite the particular area of early onset being dramatically underfunded, Alzheimer’s Australia were great, providing resources, contacts, seminars and an early onset key worker which provided advice and offered direction.
The family liken Sue’s condition to having a seven second reset. Ian compares it to the quote, “life is like a box of chocolates – you never know which one you are going to get.”
In honour of Sue and her battles, Ian and his family will be taking part in the Melbourne Memory Walk and Jog which will be held on Sunday 22nd April at Westerfolds Park in Templestowe.
This park remains a special place for Ian as he fondly recalls walking with Sue and their loyal dog Charlie every Saturday morning for seven years.
Ian has raised just shy of $4,500 with all proceeds going towards Dementia Australia. The money will help provide vital support services such as counselling, support groups and education, whilst creating awareness that Alzheimer’s is not just an elderly person’s disease.
And whilst Ian and his family continue to spread awareness and fight for change, their love for Sue is something that will continue to inspire people every day.
“The sass of that woman (and still now) was astonishing… she was a very fit and very healthy lady and loved to take pride in her appearance,” Ian said.
“She was, and is truly beautiful…”
Anyone who would like to donate to Ian’s fundraiser can do so by visiting here.