Keri Kitay's mother Terry had always been the bedrock of their family.
She was easygoing, the peacekeeper, the "glue" as Keri says. Terry was also always very vibrant, happy and social. So when her personality started to change, it stumped everyone.
"Initially we thought maybe she's suffering from some sort of depression, as she had become really inward and reserved. My dad, my two brothers and I would be sitting around the dinner table laughing and joking and she was just disengaged from the conversation completely. She was there physically, but mentally she was somewhere else," Keri explains on Mamamia's No Filter podcast.
Keri and her siblings, who were late teens and early adults by this point, were certainly curious and a little confused, but they weren't overly worried.
But there was one moment in particular back in 2010 that has always stuck with Keri.
Watch: a man with early onset Alzheimer's brings Q+A host to tears when sharing his story. Post continues below.
"I met her at our local shopping centre, it was a normal day. We were shopping for a dress for my cousin's wedding. When we were leaving the centre and walking to the carpark, Mum just froze. She had a really worried look on her face and she got really agitated and somewhat teary," says Keri.
"She couldn't remember where she had parked. We had been coming to this centre for 15 years, to the same spot, and she literally had never got lost before. It was really uncharacteristic."
It was her mum's apparent inability to rationalise, plus the immediately panicked reaction that felt off to Keri. She remembers telling her dad about the incident, but at the time it was isolated and they didn't think much of it again. That was until a pattern began to emerge.
"There were lots of little things. She didn't want to drive anymore, she felt uncomfortable and would always come up with an excuse. She became very withdrawn, and wasn't talking much at all, which visibly upset all of us. Suddenly she had no idea how to do her job, which was bookkeeping and accounting for my dad's business."
It reached a point where someone external to the family, an accountant who worked with Keri's father, pointed out that things weren't right with Terry. She was 54 at this stage.
The family weighed up the possibilities. Perhaps it was a mental health episode, maybe it was related to menopause. At no point in the conversation did the possibility of Alzheimer's or dementia come up.
Keri and her family — along with many people — didn't realise someone in their 50s or even younger could be diagnosed with Alzheimer's. There was also no history of the disease in their family. Sadly though, it was the reason behind Terry's drastic change.
On June 11, 2011, Terry was diagnosed with early onset Alzheimer's.
"I think there was a part of her that knew something was wrong. And there was a bit of a shame attached to it. So she would get really upset anytime you took her to a doctor or anytime that you mentioned something potentially was wrong, or we needed to go seek help," explains Keri.
"I remember my dad calling me and telling all of us to come over to the house. Mum and dad had been told the diagnosis, I don't know how much of it had registered with her, but she was really upset about it. We sat there at my parent's place and talked it all through and began Google searching about it."
Drilling into action mode, Keri's father Martin reached out to colleagues and friends who worked in the dementia space for support, and they also relied on their local Jewish community to get through the shock of it all. They also organised a wider family meeting to announce the news.
"It was a really hard process. We called the family meeting and my mum's brothers, aunts and uncles all came, along with a dementia specialist. Mum also came to that meeting but we never held another one again. I don't think she could really comprehend what was going on at that stage, and we realised it wasn't going to do her any good to be there."
They had begun the start of a devastating journey, "the long goodbye" as Keri calls it — having to navigate unfamiliar and extremely emotionally complex terrain for years on end. It's a reality so many Australian families also know firsthand.
Alzheimer's is a form of dementia and a progressive disease, where dementia symptoms gradually worsen over a number of years. Early onset Alzheimer's typically impacts behaviour and memory, and is related to those who are diagnosed under the age of 65. The prognosis is grim.
"With early onset you actually deteriorate a lot quicker. The first thing the specialist said to us was, 'I'm not going to sugarcoat this for you. This diagnosis is a death sentence.' They said it could take anywhere between one to 10 years."
During the next almost 10 years, Keri and her loved ones did whatever they could to keep Terry as content and comfortable as possible. In the first few years post-diagnosis, they implemented lots of plans to make sure she would never be alone by herself for more than a few hours.
As the years went on though, and Terry's cognition worsened, there were scary moments.
"I had come to my parent's house in the afternoon to see my mum and she wasn't there. My brother also arrived home and we still couldn't find her and we panicked. We started driving around the neighbourhood and she had walked down to the shops without knowing what she was really doing."
They tried to maintain as much normality as they could though.
In those early years, Keri went on holiday with her mum and dad to Hawaii. It wasn't exactly smooth sailing.
"From the moment we arrived, mum was just in a foul mood. Everything was really difficult. Then I left the trip after the first week and they continued on in Hawaii. And literally as soon as I left, my dad said mum's entire mood changed. She was happy and kind of normal," says Keri.
"What had transpired was that she had thought I was 'the other woman' on the holiday with my dad... it's funny but also not funny. She hadn't known who I was and had been like, 'Who was that woman with you the whole time?' to dad. That's not to say she didn't recognise me after that. It just showed how easily her memory was going."
After years of Terry being able to stay at home and have her husband Martin care and look after her, the difficult decision was made to house Terry in a support facility.
"My dad took her for lunch with my aunt and uncle to a restaurant on the water which they often went to, so it was a normal day. My brothers and I then went to their home, and packed up some of her things and mementoes. We then all spent the afternoon at the new place, made her feel comfortable and the specialists decided to give her a sedative that night as well to ensure there was little chance she would be distressed," says Keri.
"She never really asked to 'come home'. She maybe mentioned the family home every now and then, but the care she received was incredible and amazing."
For the final years of Terry's life, her family was in what they call 'the mourning period'. It went for a significant amount of time, the final goodbye stretching on and on.
"The hardest part was visiting and there would be zero interaction from her. We had her grandchildren visit, we tried to create really happy memories there with her, rather than making it a hard place to visit or a hard thing to do."
There were a few days' warning before Terry passed on. At this point she was confined to her bed or in a lying down wheelchair. Keri thought her mother looked to be in pain and she could only consume liquids. Terry's breathing also appeared very laboured.
When Terry passed away, Keri felt relief.
"I felt like I had been saying goodbye and mourning for almost 10 years. So when she did pass away, I felt relief for her. It was not the type of life my mother would have wanted to live. The suffering had ended," says Keri.
Keri and her family have had their ups and downs in the years since Terry's death. They remain very close knit though.
"You notice her missing presence. In those moments you really feel the void. My dad is 69 years old now, and it makes me sad that he doesn't have my mum or her companionship to enjoy life and travel with. That's what they had planned.
"We know that no one will ever replace my mum, but I am happy that my Dad can find some joy in life again. We miss mum every day."
You can listen to the full story on Mamamia's No Filter now.
For more from Keri Kitay you can purchase her memoir The Long Goodbye here.
Feature Image: Supplied.
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