Dementia has many faces. They are white-haired, bespectacled, false-toothed and etched with wrinkles. Faces that are difficult to reconcile with that of Suzie Russell, a quick-witted blonde with a taste for bright clothing and chunky jewellery.
It is only the odd prolonged pause, a vagary in her conversation, that suggest the 55-year-old Levin woman is living with the reality of what most know as an "old person's disease".
Suzie and Len Russell, married 15 years, have faced off dementia with buckets of black humour since the self-professed "loopy lady's" diagnosis three years ago. Suzie was 53 and living in Australia when she got the news. She had been working in an office job in Queensland and her managers found she needed retraining for simple tasks every day.
"We both thought there was something wrong," says Len of her forgetfulness, a hallmark of dementia. "I thought it was just stress," Suzy recalls.
Then the hallucinations began. She saw animals and people that were simply not there.
A series of neurological tests yielded alarming results. Suzie had vascular dementia and six weeks later suffered her first stroke.
In recent weeks that diagnosis has been clarified - her hallucinations stem from a sub-type of dementia known as Lewy body. The only silver lining of the news is that Suzie may retain her lucidity longer than expected.
"We were quite thankful that was the result," Len says. "We would have liked something better after three years of this. She will be ‘la-la', but . . . " Suzie cuts in to finish his sentence: "Just normal loopy!"
There are almost 25,000 people between 65 and 85 living in the MidCentral region. That population is estimated to increase to 40,000 by 2026, and Alzheimers Manawatu's chief executive Paul O'Brien says baby boomers will carry with them a "tsunami" of dementia sufferers.
In the past four years, field officers claim, the MidCentral region has experienced a four-fold increase in the number of people suffering dementia. The MidCentral District Health Board is planning to spend $4.4 million on dementia services this year.
Suzie counts herself luckly that her dementia is not far-enough progressed to strip her of her ability to socialise and to speak out about her condition. She believes there is still a stigma attached to what people mistake for "senility" and it prevents sufferers from seeking help.
"I find it strange that people don't want to talk about it . . . I think why ‘wouldn't you?'
"I do some bizarre things sometimes and I want people to know about why. I can understand that some people don't want to talk about it, some of my older relatives say ‘Oh, I used to do that', and I say, ‘but you didn't try to open the car door with the house key when you were 53'."
The Russells give a picture of how demanding dementia can be.
"I pretty much do everything, really. Except cook, thank God. She's a bloody good cook - you just have to keep an eye on her."
The problem, says Len, is not so much her ability to function - it's remembering whether she has already washed her hair, whether she has already cooked lunch or taken the dog for a walk.
Suzie describes being inside her mind as like being in a perpetual state of deja vu. "I call it Groundhog Day. People don't know what's going on when I'm just sitting there. They wouldn't know I'm having a bit of a moment."
Manawatu Alzheimers field worker and former nurse Hayley Luke has worked with dementia patients for the past 18 months at the specialist Marion Kennedy Centre run by Manawatu Alzheimers in Palmerston North, and has watched the waiting list grow.
Care for dementia patients is about to be stepped up to supply Horowhenua and Tararua, and the Russells will spend every Tuesday in a new day centre being set up in Levin by Alzheimers Manawatu - Len will cook for the centre's clients while Suzie undergoes diversional therapy.
Ms Luke has nothing but admiration for the good humour the Russells bring to their lot in life. "I think there's that myth that once you're diagnosed your life stops. But I think that's not true."
Suzie agrees. "I think the worst thing is knowing a part of me dies every day. But they said to me the last thing to go will be my humour and I said ‘thank God for that, I live off that'."
- © Fairfax NZ News
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