‘My mum has dementia’

Dementia is devastating, and doesn't just hit the elderly. Source: Supplied

IN 2012, Pilates instructor Louise Palmer started to become confused about tasks she had previously undertaken with ease.

In May 2013, at age 54, she was diagnosed with frontotemporal dementia (FTD), which is the second most common form of younger-onset dementia, after Alzheimer's disease.

Frontotemporal dementia causes a severe degeneration of brain cells in the frontal or temporal lobes that leads to symptoms including personality changes, loss of communication skills and alterations to social behaviour.

Here, her daughter Riley, 25, talks about slowly losing her mother to the disease.

This is Riley's story. Source: Supplied

"Mum used to be a supermum. Energetic, vivacious and sporty, she loved to socialise. She was incredibly independent and fiercely stubborn and could make everything OK, like in primary school, when I was drawing a border on my Egypt assignment and a flood of gold ink oozed out. I was distraught, but my creative mother turned the mess into a pharaoh's head.

She and Dad took us on adventure holidays to the snow, waterskiing and even hiking in the Himalayas. She was an aerobics instructor and volunteered to teach aerobics at our primary school. She was the 'cool mum' who used to rock up in Lycra, big hair and headbands.

Before we [Riley has a brother, Elliot, 27, and sister, Tegan, 23] were born, she studied Japanese and lived in Japan with my dad for a couple of years, where she became fluent.

Two years ago, she started asking for help with things like her bills. She did other out-of-character things, too, including misplacing car keys that we found in the ignition. Because she is so young, we didn't think something could be wrong until her friend said, "Maybe it's a brain tumour?"

In early 2013, the GP ruled out a tumour after sending Mum for a CAT scan, then a neurologist did behavioural tests and diagnosed FTD. By that stage, my sister and I knew there was something seriously wrong, but the diagnosis was a huge shock for Mum. She rushed out of the neurologist's office and started crying. I'd never seen her cry before.

A CAT scan ruled out a tumour but a diagnosis of dementia was a huge shock. Source: News Limited

I was devastated to see the essence of the mother I loved slowly slip away. She used to be chatty but has stopped making conversation. I'll ask how her day is and she'll say, "Good," but won't ask, "How was yours?"

She's in her own world, doesn't seem to enjoy anything and is rarely happy. She's always stressed and anxious. She can't communicate clearly and gets infuriated because she thinks she's explaining herself perfectly well.

Initially, her decline was rapid. She'd panic because she didn't know what was going on and where she was meant to be. Tegan and I spend a few nights a week at her place, and my older brother Elliot also does his bit. Mum's ability to regulate her emotions has also been affected. When I say goodbye, she's teary, which makes me feel guilty. I feel bad when I'm not there to help her, and doubly guilty if I lose my temper, because it's not her fault.

Continuity is really helpful for people with dementia, so Mum's schedule focuses on rigid routines, with just one external activity a day.

Every morning she looks at a huge wall calendar we made for her. She fixes herself a juice, showers and prepares to go out. It's all about sticking to a routine. Mum has lots of lovely clothes but wears the same thing every day, and washes it each night. It's easier for her when things are non-negotiable.

She's better in the mornings and when she's outside — this is because home can be a trigger, as there are routines associated with it. When Mum went on holiday to Adelaide, she managed to go along with what her friend was doing. It was as though her sense of responsibility for her place and self disappeared, so she didn't feel that burden.

'She's better in the mornings and when she's outside'. Source: ThinkStock

Mum has never been a big drinker, but six months ago she stopped having the few glasses of wine she'd drink a week, and that improved her cognition.

I always remember Mum as youthful. She'd go out dancing with the girls, to the movies and dinner. But now she doesn't do that. She can't drive or work or manage much. She's a completely different person from the one she was 18 months ago.

There's great help out there. Frontier Research, the clinical research group that studies FTD, is monitoring Mum annually, and gave us excellent information to help us understand the changes she's undergoing.

As so little is known about FTD, we hope Mum's contribution to its research will help others.

Alzheimer's Australia allocated a key worker who connected us with services, including HammondCare. The charity found a carer Mum's age who's happy to do activities she enjoys, such as bushwalking twice a week.

Often, strangers don't understand, especially because Mum is so young. She's unaware of much that goes on outside of herself; in the supermarket she'll stop and make sure the money is in the right part of her wallet, then put it in her bag slowly. Some people stare, as if thinking, "What is this woman doing? Hurry up!"

Other people are really kind. Once, someone drove Mum home from the supermarket with all her groceries.

Grieving for the mother I used to have is important. The more I do that, the more capable I am of being in the present and dealing with the reality. In her eyes, Elliot, Tegan and I are always going to be her kids. Often Mum's reluctant to take our advice, because she feels she's meant to be in charge. When her own mother visits from New Zealand, Mum becomes like a subordinate child and relaxes and doesn't feel as anxious.

The doctors don't know what caused her FTD. Our family has no history of dementia. There's no medication at this stage. I don't think Mum has thought about her prognosis — she doesn't have that foresight; she's more in the moment.

Her condition is degenerative but often plateaus, which is what's happened in the past three months. Some sufferers pass away in three years; others, 15. It's similar to Alzheimer's in affecting motor function. Of course, I worry that I'll get it, too.

Our family has come together to support Mum. I organise appointments and Tegan takes her. Although my parents separated 10 years ago, Dad's been wonderful, sorting out her financial and legal affairs.

Dad knew Mum in a different way, and it's awful for him to have her ask if she's allowed to do something like turn on the heater. It's likely that she'll need to go into a nursing home; we'll cross that bridge when we come to it.

I know it sounds weird, but I hope she maintains a lack of insight into her condition and that she doesn't have the capacity to look back and miss things. I dream that she continues to be in the present moment, doing what makes her happy and being around people she loves and can laugh with.

Mum and I are really close. Before her diagnosis, we used to go for bushwalks or dinners. She was very non-judgemental and, as a result, we kids told her almost everything. She was great at giving advice — she didn't sugar-coat things. She was such a strong and confident woman, and a great role model.

We don't really talk any more because there's not a lot she has to say. If she does talk to me, it's usually to ask, "Can you help me? Is today Friday or Wednesday?"

The saddest part has been losing the person you go to when your world falls apart. No matter how old they get, a lot of girls think, "Mum will know how to fix that."

Now I have to become that person for myself. I have to learn how to love what she is in this moment, over and over again, instead of the supermum she used to be."

September is Dementia Awareness Month. For more information, visit fightdementia.org.au or call the National Dementia Helpline on 1800 100 500.

As told to Annette Dasey. Follow Annette on Twitter @annettedasey and download the Sunday Style app here.

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