“My dad isn’t dead. But the man I remember is.” The little-known disease tearing Australian families apart.

My heart is heavy, knowing that my daughter will never know my dad the way I remember him.

My dad was always the life of the party. With sparkling blue eyes, a cheeky smile and a schoolboy’s charm, everyone said my dad could sell ice to the Eskimos.

Guests from my 2012 wedding in Las Vegas still ask after him, laughing when they recall him entertaining everyone on the stripper pole in the limousine at our shared Bucks & Hens.

What is Korsakoff Syndrome?
My dad on the stripper pole.

Certainly not all memories of my dad are fond – we butted heads constantly.

He was a hard task master and emotionally unavailable as the result of a difficult and abusive childhood. But, he taught me the value of hard work and how to close a deal. We share a love of the outdoors and the same dark and sarcastic sense of humor.

He also taught me how not to weed the veggie patch by almost burning down the yard and how to respect the awesome power of electricity by electrocuting himself that time he tried to change a lightbulb on my parents classic 70's bedhead. Great memories.

My dad isn't dead. But that man I remember is.

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My dad has a little-known neurological condition called Korsakoff Syndrome (KS). According to the Alzheimer's Association, "Korsakoff syndrome is a chronic memory disorder caused by severe deficiency of thiamine (vitamin B-1).

Korsakoff Syndrome is most commonly caused by alcohol misuse, but certain other conditions also can cause the syndrome."

In laymen's terms, Korsakoff Syndrome is essentially a type of dementia most commonly brought on by excessive drinking.

My dad, like most friends and family in Australia, was a social drinker and has been known to binge drink.

Dr. James Giordano* from Georgetown University in Washington, DC explained to me the basic difference between Korsakoff Syndrome and Alzheimer's.

"KS presents as a progressive loss of short and long-term declarative memory (ie- memory of facts, events, etc.), but little or no change in procedural memory (ie- memory of how to do things).

"A prominent feature of KS is confabulation - making up aspects, details and facts of narratives to compensate for the loss of memory.

"KS patients also exhibit blunted emotional expression and have "low content" conversation (ie- their conversations tend to be very constricted in range and depth of content).

What is Korsakoff Syndrome?
My dad with my sister in 2016.

While Alzheimer's dementia also involves loss of memory, it characteristically presents with progressive loss of short term memory, and initial preservation of long-term memory, with iterative loss of executive function and capability.

While KS is not common, early stage KS and AD can be similar in presentation."

In retrospect, all the signs were there, even when my dad was in his late forties. He would sometimes forget my own name, often introduce me to people I'd already met (and had sometimes known for years) and ask questions that he should have known the answers to.

He'd repeat stories constantly, and I'd catch him frequently in a lie with a sideways grin to cover the gaps in his memory, like he knew exactly what he was doing. It is clear to us all now that his mental decline was signalled by the end of his career.

I remember my dad being particularly sharp and great at most things. He ran away from home in his teenage years to become a sailor. He was a seaman in the Royal Australian Navy and gave his one-year notice the day I was born.

Throughout my childhood, he proudly hung an American Flag in our dining room that had been gifted to him from the US Navy after it was flown at the USS Arizona Memorial in Pearl Harbor.

After leaving the Navy, he and my mother tried their hands at a number of wholesale distribution companies.

There was a brief stint in Amway. He was a landscaper for many years, and a very good one at that. I remember him getting a 'real' job with a company car and a fat $30k pay packet in the 1990's. He very quickly worked his way up the ranks and became a sales manager at a large food distribution company.

Later in his career, he studied to get his real estate license and I genuinely think that selling houses gave him the most joy of his life. Again, he quickly showed his prowess and became the state manager for a well-known international real estate brand.

He parlayed that talent into mortgage broking, and later, water trading before his faculties betrayed him.

Bec Sparrow and Robin Bailey discuss the importance and fragility of the paternal bond. Post continues after audio.

As his memory function declined fairly steadily over the past decade, he became almost intolerable for me, my sister and my mother to deal with. He would become moody, verbally aggressive and lash out at us – he most likely spent years trying to hide how bad things were becoming for him.

He was fearful and depressed and would drink to hide from his fears, and little did we all know, that only made the problem worse.

We all knew something was wrong but struggled to get him a diagnosis. Dad is not a particularly co-operative patient and he was very good at keeping up the façade.

Even though my parents separated after 33 years of marriage, my mum continued to advocate for dad and eventually got him the diagnosis we weren't expecting.

Korsakoff Syndrome.

Dr. Giordano says that if caught early enough, KS can be treated, with many, if not most signs and symptoms lessened if not reversed.

"Early to mid-stage KS can often be successfully treated by the infusion of thiamine and with continued thiamine supplementation. Often combined provision of other B-vitamins can be helpful in producing improved clinical outcomes.

"However, if KS is more advanced, and there is notable loss of brain tissue, thiamine supplementation is often ineffective."

Unfortunately for my family, my dad is in the latter category.

What is Korsakoff Syndrome?
My dad on the left in his navy days.

Caring for someone with Korsakoff Syndrome, in my experience, is extremely challenging.

People who suffer from this syndrome can have trouble retaining new information, experience short term memory loss and significant memory gaps. The key indicator of Korsakoff Syndrome, confabulation, can be particularly difficult to deal with.

Sufferers 'make up' information they can’t remember to fill in the gaps. This looks a lot like lying to everyone else, except the sufferer tends to believe the information they have invented. My dad happens to be the king of this.

It is incredibly frustrating. Other symptoms can also include kleptomania, neuropathy, hoarding and a loss of self-care (dad basically stopped remembering to shower).

These days, my dad never knows what day or time it is, let alone what year. He struggles to remember my daughter's name and whether she is a girl or a boy, because this is new information that he is basically unable to retain.

Having a conversation with him can go around in circles and he'll forget things he said just a moment before.

My dad is not yet 60 and he lives in secure emergency housing in Adelaide's western suburbs, where trained professionals can care for him around the clock.

Prior to this, he lived in an 'SRF' or supported residential facility since 2015. Because Dad is under 65, we were unable to get him into a Nursing home or proper care facility.

Our Medicare case worker confirmed that younger people with Korsakoff Syndrome almost always fall through the cracks until they become a significant risk to themselves as they do not fit in any typical mode of care for dementia patients.

An SRF is basically a private facility that uses the persons' disability pension to cover room and board and food. In dad's case, he was in a facility with a lot of people with brain injuries and addiction problems.

He could also come and go as he pleased, which meant we were unable to ensure that he didn't get lost (he frequently did) and also the minute the day staff left, he would drink with the other residents out of boredom and loneliness, thereby making his condition worse. There was no way to reason with him.

We had to take away his car, his license, his bank cards and important documents. I've lost track of how many mobile phones he lost, including two special tracking phones for dementia patients that Mum bought him.

We were essentially told by his case worker that we had to wait for something drastic to happen in order to push him through the years-long wait lines for the right type of care.

Finally, that day came. In October 2017, my dad went missing for three days. It wasn't unlike him to be away from his facility for half a day or so. He often roamed the Adelaide city streets at night collecting cans for money and something to do. But he always came back to his warm bed and a hot meal.

The police had already returned him once, some months prior, after they found him cold and shivering in the early hours of the morning – more than 15kms away from his accommodation.

We think he was trying to walk back 'home' to the last family home we had all lived in. But this time was different. The facility manager called to say that it was probably nothing, but they hadn't seen him in two days and it was uncharacteristic. My mum called me in LA.

"Don't worry – I'm sure he's fine, but we're out checking hospitals and places he is known to go," she said.

Of course, I worried. Living now in Los Angeles, so far away from my family makes it difficult in times like this. My mum and uncle checked with police, hospitals and homeless shelters, while my sister and brother in law hit the streets to go looking for him in the usual places.

With nothing else to do but sit and wait to hear, I posted on Facebook. I shared with my friends back home and asked people to keep an eye out. The good people of Adelaide rallied behind us and my post was shared thousands of times. My dad was officially listed as a missing person and after some good tips, SAPOL located my father at 2am, sleeping rough in Adelaide city. He was disoriented and dehydrated with swollen and bloody feet.

What is Korsakoff Syndrome?

He spent a couple of days in hospital before being transferred to his new (temporary) home where he now gets the care and supervision he really needs.

He is happier and healthier in his current home. He no longer has access to alcohol. He has more clarity as a result - but what he has lost is already gone. He cannot function with even the simple daily tasks on his own.

The key to helping people with Korsakoff Syndrome, according to Dr. Giordano, is early, accurate diagnosis. "However, in many cases, patients resist treatment and care (and often deny that there is a problem), and/or continue to consume high quantities of alcohol.

In such cases, implicit stigma may play a subtle - although influential - role in the way these patients are regarded, and in some instances treated, as well (in that KS may be viewed as 'self-induced' through the inability to control one's drinking). Recognising - and addressing - the unique features of KS patients (eg.- memory loss, profound confabulation, being minimally conversant, apparent apathy) is important to both diagnosis and the type and extent of care required."

I used to wonder how people could possibly become homeless. I used to think 'Don’t these people have families who love them and can care for them?'.

Now I know. One day my dad lost the ability to know his own name and find his way home. He could have so easily been absorbed into the city's homeless population or succumbed to the bitterly cold weather after several days of exposure and no food or water. There is a case here in LA, not far from where I live that strikes a deep chord with me.

What is Korsakoff Syndrome?
Photos of my dad I posted onto my Facebook page.

In October of 2016 Nancy Paulikas, a 55 year old woman with early onset Alzheimer's, wandered away from her family during a day at the busy LACMA museum. She simply went to the bathroom and then walked out of the museum. To this day she has still not been found, despite a high-profile search from her family and friends.

Caring for such family members with high needs is not easy. My mum is my hero. Despite their divorce and my dad's frequently challenging behaviour, my mum has remained a steadfast advocate for my dad.

She has, with tenacity, spent many hours on the phone with Medicare and doctors and fought to ensure that my dad does not slip through the cracks. We are 'lucky' he is now in a more suitable home, but we shouldn't have had to wait for him to go missing to get him the care he always needed.

And for my daughter, the dad I knew will have to live on in my stories.

Do you think a loved one could be suffering from Korsakoff Syndrome? The first step towards diagnosis is getting them to a GP and discussing the symptoms. It is important for a family member to provide support and help relay critical information to healthcare professionals.

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