At 54, Terry Kitay was diagnosed with early-onset Alzheimer's disease. This is her daughter's story

Terry Kitay (left) with her daughter Keri Kitay before she was diagnosed with Alzheimer’s disease. (Supplied: Kitay family)

When Terry Kitay reached her 50s, she was living a full life enjoying holidays with her husband and adult children, working and socialising with friends.

But when a series of unusual incidents slowly formed a pattern of changed behaviour in Terry, her husband Martin took her to see their doctor.

Ultimately, at the age of 54, Terry was diagnosed with early-onset Alzheimer’s disease — the most common type of dementia.

It is progressive and there is no cure.

Terry’s diagnosis came as a huge shock to Martin and their children Greg, Keri and Ricky, having believed that dementia was an illness that only affected people in their 80s and 90s.

They soon learned that their mum was among the 7 per cent of Australians living with younger-onset dementia — some aged in their 30s, 40s and 50s.

Nine years after Terry’s diagnosis, after progressively losing her memories and abilities, she passed away.

Terry was 63.

This is her daughter Keri’s story as told to Richard Fidler on ABC Conversations.

Here, Keri describes her confusion and grief as she watched as her mum slowly disappeared.

She also shares a message for the friends and families of the 244 Australians who are diagnosed with dementia every day.

A ‘normal’, loving mum

Both my parents came from really traditional Jewish families.

They had a beautiful, big, traditional Jewish wedding — stepping on the glass, lots of dancing and just really fun.

When I think back to my mum, pre-Alzheimer’s, sometimes the memories of her are quite blurry, but I definitely remember she was the kind of mum who was with my brothers and me all the time.

She was just a normal mum and did absolutely everything for us.

We were a really sporty family and spent a lot of our time at sports practice after school and games on the weekend and she would literally schlep us to practice and every single game.

And she was just the glue that kind of held the family together. We always used to call her the peacemaker.

My dad owned a dental practice and mum would go and work there a couple of days a week.

But mostly, what I remember about my mum, is just the kindness that she always showed to other people.

She loved to laugh, and she just loved to be with her friends and family.

A turning point

Mum was the kind of person who never liked to burden anyone with anything that she was going through.

So when my grandmother had a stroke and later died, Mum never really spoke about it or dealt with it.

I think when you leave something that traumatic and don’t talk about it, it just manifests over time and gets worse inside.

It wasn’t something she ever expressed to us or spoke about, but I definitely noticed a change.

She became a little bit more withdrawn and wasn’t her usual outgoing, bubbly self.

Then, one day I met her at the local shops that we had been going to for 15 years.

We went shopping and everything seemed like a normal day until we were leaving the shopping centre to go home.

As we were walking to the car park, she became really, really agitated.

I saw a look of fear go over her face and I didn’t really understand what was going on.

As we walked out, she just froze. I asked her what was going on and she said, “I don’t know where I parked.”

I thought that was really strange and uncharacteristic of her. There was an absolute sense of panic around her.

She started getting really upset and agitated and I think it didn’t help that I was agitated as well.

I didn’t understand. It wasn’t like, “I’m not sure if my car is on this level”, or, “Did I park in row D or row C?”

It was, “I have absolutely zero idea where my car is.”

I got angry, and I started yelling at her, being like, “How do you not remember where you parked? We come here all the time?”

Unfortunately, reacting in that way made the situation worse.

The missing skirt

Not long later, we went overseas for a family wedding and had an incredible time.

Most of the time, you wouldn’t think that anything was wrong with Mum.

There was only one incident when we were going out and she was looking for a particular skirt that she wanted to wear.

She couldn’t find it and, again, the same thing happened — she panicked.

She started crying and had no idea where the skirt was. It was just really strange behaviour.

We tried to reason with her to help try and retrace her steps but she just couldn’t come to terms with what was going on.

At the time, I thought, “This is a little bit over the top — it’s just a skirt. It’s somewhere in the apartment.”

Not realising what was actually going on, we all started yelling at her because we thought the behaviour was quite ridiculous.

But our reaction and being so irritated made it worse for her.

Realising something’s ‘definitely’ wrong

Mum would always do my dad’s accounts work for his dental practice.

She would prepare the business activity statement for the quarter and send it to the accountant and was very capable at doing it.

But all of a sudden she would get completely confused and mess it up.

The accountants started noticing that she was sending in work that was completely wrong and called my dad.

They said, “There is something wrong with Terry. She sent in the work, but it looks like a dog’s breakfast. There’s definitely something going on.”

At that point, my dad made the first call to the doctor who referred her to a neurologist.

Ultimately, she had a PET scan and the results instantaneously showed she had early-onset Alzheimer’s.

She showed all the classic signs of someone with dementia; someone becoming withdrawn and not feeling competent to do things.

Whether it comes to conversations or following directions to get somewhere, they can’t sequence things the way that they used to.

All those times when we were sitting in groups having conversations and Mum was withdrawn, it was because she couldn’t follow the conversation.

And her getting agitated was a by-product of the fact that she just couldn’t be part of normal conversations or activities, because, for her, her brain wasn’t functioning the same way it had been.

Not just a disease for ‘old people’

Everything around the diagnosis and us talking about Alzheimer’s was really upsetting for Mum.

She was really confused and was always really teary around the subject.

I don’t know that she ever really fully understood.

But I was quite angry with the diagnosis.

I remember thinking, “How has this happened to someone so young?”

I just didn’t understand it — nobody spoke about dementia specifically with young people back then.

I knew that it was an old person’s disease, so I honestly felt a little bit ashamed in a weird kind of way that now my mum was different.

The professors that we worked with in those early days of my mum’s diagnosis really believed that it wasn’t hereditary.

They believed it was probably more lifestyle-related, maybe epigenetics, trauma, stress, environmental — we don’t know.

And we still don’t know, because we haven’t been tested for the genes for Alzheimer’s.

A brutally honest prognosis

My mum came with us the first time we all went and met with a dementia specialist.

It was someone we knew.

She sat us down and said, “I’m not going to sugar-coat this. The prognosis of this is not good. The lifespan of this is not great.”

They said she could have six months, two years or 10 years.

That was a timeline we were somewhat given, but nothing was definitive.

We knew that over time, she would lose her memory.

We knew that over time, she would lose function and ability to talk and walk and recognise us.

We just didn’t know when or how that was all going to transpire.

Having that brutal information and knowing that there’s no cure for this, the only thing that you can do is make sure that they live a comfortable life, maintain as much of their dignity as possible, and get the best care for them.

But this isn’t a reversible thing. This is something that is going to just get worse and worse over time.

The stigma of brain disease

For so many people, especially my mum’s friends and family who were her age, they had never experienced Alzheimer’s before with such a young person.

And so when my mum’s personality changed, and she wasn’t able to follow a conversation or interact the same way that she had, I think a lot of friends and family were scared by that and didn’t really understand how to interact with Mum anymore.

People went away as opposed to leaning in and didn’t treat her like a human being anymore and treated her like she was different and there was something wrong with her.

But Mum was also aware of people turning their back on her in those early years when she was so capable of understanding things.

She saw friends chatting about her in the corner and not coming and saying hello to her.

That really upset her, and upset all of us as well, because you just need to be kind to people.

You could literally sit at a coffee shop, and just stare into nothing and just be there with Mum, and there were lots of people who did do that.

My mum had an amazing friend who would walk with her every week and my aunt Shelly would sit with her by the beach, just watching the water.

Or Shelly would be walking in the supermarket aisle doing some shopping and a song would come on, and my mum would start singing and dancing, and Shelley would embrace that and do that with her.

Shelly would also come over and care for Mum during the day.

They would put on music and sing and dance and laugh and just enjoy each other’s company and have fun.

She was someone who brought my mum a lot of joy in those times and they just had a relationship like nobody else did.

So my advice to anyone who is faced with a situation like this is to be kind.

How would you like someone to treat you if you had cancer or if you had Alzheimer’s, or if you had a spinal cord injury and your whole life changed?

I think kindness goes a very long way.

One of the hardest days

For the first few years, my dad just didn’t want to even think of residential care being an option for Mum.

He wanted to care for her at home for as long as he possibly could.

I look back now and I just take my hat off to him.

He devoted himself to my mum’s care and was still running his own dental practice and supporting everybody how he always was.

He looked after my mum in a way that my brothers and I will be forever grateful for.

We worried about him though.

We felt like Dad used to look after my mum and my brothers and we had to manage Dad — he had taken on such a big responsibility.

Eventually, it did get too difficult when Mum was up multiple times throughout the night and my Dad was still having to get up in the morning, go to work and have his normal day.

It was better for everybody that she would be in full-time care.

On the day that we took her there, we set up a room with some photos, her blanket and some cosmetics, so there was some familiarity there, and we stayed there for the afternoon.

Eventually, my brothers and I went home, and my dad stayed there for dinner.

Mum went to bed, and there was no resistance, but my dad was the one who really struggled that day.

I’ll never forget this, but he was driving home, and he pulled over on the side of the road because he was crying uncontrollably, and called us and said, “I think you need to come pick me up”.

We were able to settle him so that he could drive home, but that was just a really, really traumatic day for him.

But luckily, in a sense, Mum never really asked to come home.

I think, unfortunately, she had lapsed so much that she wasn’t really sure what was home and what wasn’t home.

The last goodbye

The real-life Alzheimer’s journey is not that long and goes in stages.

It starts with losing your memory and forgetting people’s names, places and faces.

You go from being able to walk unassisted, then you need to walk holding on to someone, then you go into a wheelchair, and then you can no longer walk.

At the start you go from being able to talk and have a conversation, to then just mumbling, to then not talking at all.

For family and friends, you’re going and visiting this person, and you’re just sitting there in silence because they can’t converse with you.

In those final stages, you can’t feed yourself, and you’re having to be taken out of bed in the morning, hoisted into a wheelchair and moved around from the dining room to the garden.

It’s to the point where you’re just actually lying in a bed, somewhat lifeless.

You stop being able to really swallow or take any liquids and food.

And then, like in my mum’s case, she was gasping for air until she finally let go.

It was just my dad and my two brothers and I, and we sat around my mum and each of us, in our own way, said our goodbyes.

The nurse that night said to us she was going to pass in the next 12 hours and told us to go home and come back in the morning.

We went home, and within half an hour of getting home, we got a call to say that she had passed.

I think she felt at peace that we were together and like everything was going to be okay — it was like permission for her to go.

Keeping Mum’s memory alive

With Mum now gone, every time we get together — be it a family Friday night dinner, or it’s a kid’s birthday, I always look around the room and just notice that void that she’s not there.

Especially when the family is together, and I look and see my aunts together. My mum would usually be with them — it’d be the three of them — and now it’s the two of them.

We’re always feeling that void and we’re always acknowledging it as well.

One of the things that my brothers and all of us have been incredible with is just making sure there’s a place in the six grandkids’ lives for Mum.

Because they were so young when she passed away, and two of the kids weren’t even born.

They know about her, we talk about her all the time. She would have been an amazing Bobba to them.

They very much call her Bobba, even though she’s not here, and she’s very much remembered.

Listen to Keri Kitay’s interview in full on the Conversations podcast via the ABC listen app.

For 24/7 expert information and support call The National Dementia Helpline on 1800 100 500 or visit Dementia Australia.