Love lasts the hard yards

Dementia is a cruel condition that can strike the middle-aged as well as the old. But for the sufferers and their carers, it's not the end. Carly Gibbs meets three extraordinary couples whose love refuses to fade, even when memory does.

He won't remember me tonight.
But I was there.
We talked for 45 minutes. He stood, straightening his jumper, and offered me a coffee.
I declined.
He won't remember seeing me off at the door and telling me to "take care".
Waving as I ran into the rain.
He won't remember telling me this story:
In a green armchair below ornamental parrots, a painted stag and wood stacked by the fireplace, sits John Wilkinson.
He does this every day. He can't work. All he does is sit and think. And what he thinks is "why me?"
On the far end of the couch is Gwen Wilkinson. Bravehearted. A champion for a man who is changing before her very eyes.
Wilkinson hates what is happening to him and hates what it's doing to his wife of 36 years.
Dig a little deeper

The two of them had plans. They wanted to pay the mortgage off their Matua home before Wilkinson retired. Then they wanted to travel around the South Island. He wanted to fly-fish. Instead he sits.
Wilkinson can't remember what he did this morning when I ask. He searches his mind but comes up blank. But for Wilkinson, who is suffering from early-onset Alzheimer's, an answer does come eventually: "I made the bed and, ah, I went out and fed the birds."
"No, that was yesterday," Gwen corrects. "You went and had a haircut this morning."
"Oh, is that what it was?"
Wilkinson takes this in good humour but when you dig a little deeper he's an angry man.
Diagnosed with brain shrinkage two-and-a-half years ago, he hates the man he's become, and things are getting worse. His behaviour is changing. Once a quiet, well-tempered man, Wilkinson gets irritable quickly.
When Gwen has a day off work he feels "put out" because he doesn't have the house to himself.
He's not motivated to do anything and feels "bloody angry".
"For the simple reason I don't want to upset Gwen in any way," he tells me with conviction.
"It scares the living hell out of me."
The first real sign that something was amiss with Wilkinson was three years ago. He came home from work and was babbling and agitated. The family couldn't understand a word he was saying. Worried he might be having a stroke, Gwen took him to Tauranga Hospital. Later, an MRI showed he had brain shrinkage. He went back to work but things were never the same.
One day Wilkinson went missing on the job. When he eventually returned, he was incoherent. He was 63.
He was a truck driver for 40 years. Nowadays he's not allowed to drive, although he feels he could.
Gwen says that's because he doesn't reason with his condition.
Struggle with society's perception
Their dreams have cruelly been ripped away by Alzheimer's disease and their relationship has changed.
"I feel as if I have to be mother as well as wife to John," Gwen explains. "I don't enjoy telling him he has to go shower, change his clothes. I don't enjoy having to do that but it's something that we have to do.
"You marry someone and that's your life partner and then you're getting to the end of your life and your children have all grown up and then all of a sudden your partner is changing on you. He's not the person you married, you know? And it's very, very hard.
"He's a totally different person now to who I married.
"Sounds awful, I know, but that's the truth of it," she says.
Wilkinson's bearded face is sad. He stares ahead at a rain-soaked ranch slider. He feels bad about what's happening but there's simply nothing he can do about it.
The couple have struggled with society's perception of them.
"One of the hardest things is other people's attitudes," Gwen says.
"You don't wear a badge saying, 'I am an Alzheimer's person' or 'I care for an Alzheimer's person'.
"But if John's behaviour is extreme while out shopping and you pull him in line, people look at you as though you're being nasty. People don't realise there might be something wrong with their behaviour."
For this reason, Gwen does the shopping on her own now. This upsets Wilkinson. "I enjoy going places with Gwen, even if it's only to the shop. I can't stand why this is happening. It is a very, very hard pill to accept.
"I sit here most days, except when I go to Alzheimer's group, and I'm here most of the time by myself and that leaves a lot of time to think.
"Why has it happened to me? Because I want to provide for my wife and I can't."
What are their hopes for the future?
"I'd like to go back to where I was," John says. Gwen takes a breath and heartbreakingly says: "I don't have hopes."
She does, however, have strength.
"There's coming the time when he won't remember me and I know that. We take every day as it comes."
The family caregivers

Wilkinson is one of about 40,000 New Zealanders who suffer from Alzheimer's disease or other forms of dementia. The progressively worsening memory loss and confusion can be terrifying for sufferers and harrowing for families. Those with advanced memory loss often fail to recognise loved ones, or even their own reflection.
There are another 50,000 people whose lives are also affected: the family caregivers who work each day caring for loved ones who are no longer able to care for themselves.
As baby boomers continue to age, the number of those with this cruel condition will rapidly increase. By 2026, more than 74,821 New Zealanders are expected to have dementia.
But there is no clear plan yet for how residential care will expand to meet that need and a recent Government report warns of a looming crisis.
Bay of Plenty Times Weekend sister publication, New Zealand Listener, reported the incidence of dementia was on the rise, just as many old beliefs about it were being challenged.
For decades, dangerous anti-psychotic drugs have often been heavily used to calm some more difficult dementia behaviour, such as agitation, aggression, shouting, wandering, repeated questioning and sleep disturbance.
But now dementia experts and advocates are calling for more compassionate "person-centred" care that tries to resolve behavioural problems by making sufferers more contented. In this new style of care, aggression and agitation are seen as attempts to communicate, clues to be unpicked.
Committed to helping out

"This is not primarily a medical condition," Dwayne Crombie, chief executive of Bupa Care Services, the country's biggest chain of rest homes, with more than 3000 beds, told the Listener. "They suffer from, if you think about it, an intellectual disability. It's just remembering that people with dementia are humans first."
The Minister of Health is committed to helping out dementia patients.
Tony Ryall says when National was elected, the Government put about $5 million extra into providing dedicated respite beds for people who are aged and with dementia.
This year it has put in $40 million to lift the subsidy rates for dementia beds in rest homes and set aside $1 million to have more day services.
Tony Lawson, a nurse practitioner specialising in aged care at Tauranga Hospital, says an ageing population will see the global prevalence of dementia quadruple by mid-century.
"An example is that the 10-year-olds of today, on average, have a life span of about 105."
Once you reach 65, there is an increased chance of developing dementia. By the time you are 85, there is a six-fold increase, he says.
"So if you're living longer there's a high prevalence of getting it."
The Bay of Plenty sits in a triangle with Waikato and Auckland and within that triangle we have 50 per cent of New Zealand's population.
In the Bay, about 425 people aged up to 65 have dementia and by time they reach 85, 10 per cent of the population is predicted to have it.
"We estimate that by 2026, in just the 65-year old-age group, we're going to have 900 people with dementia.
"By 2050, it's going to 1800 and that's just 65," Lawson says.
Dementia does not affect one particular gender more than the other, and only about 1 per cent of those aged 50 and younger have a direct gene and family hereditary link to the disease. Current research is on developing a "biomarker" procedure that can show development of what is happening in the brain before symptoms persist.
A different story

Today is Thursday, June 23.
For Russell "Russ" Clarke, this is the first thing on his board of reminders for today.
Every day, wife Sharyn writes down what is happening. When we arrive at 9.30am, Clarke has already looked at the board half a dozen times.
If he goes out to get the newspaper, he takes a note to keep himself on track.
Smartly dressed in maroon and black, and impeccably mannered, there is visually nothing that would tell you he suffers from dementia. Sit down for an interview, though, and he's frequently muddled.
Clarke left his job at Bunning's in Te Puke in April last year but tells a different story.
"Um, what would it be? About 11 years? No, not that long," he retracts. He turns repeatedly to his wife for reassurance or help with an answer.
Sharyn says Clarke, 61, had been showing symptoms of dementia for a good two to three years before he was diagnosed.
He would not remember the name of somebody he had just met and frequently got lost.
He once got lost in the supermarket for two-and-a-half hours because he forgot where he was, or why he was there.
"He asked someone," says Sharyn. "But by the time he'd walked away he couldn't remember what the instruction was. What he really needed was someone to go with him but you wouldn't think that looking at Russ. He looks perfectly well."
And he does. But Clarke's dementia is getting worse.
There have been three incidents in the past six weeks where he has forgotten who is wife is. "I came in from the washing and he went, 'Oh, I'll get Sharyn to make us a cup of tea' and he went past me, calling me.
"It's indescribable," she says. "I went back outside again and felt like bursting into tears."
Another incident took place in which Clarke saw his daughter outside her workplace and said: "'Oh, there's Sharyn' and started calling to her. Our daughter looks like me when I was younger and I think that's what happens - a lot of recent memory goes," Sharyn says.
Today she is tired, but she's made fudge for us. She's trying to keep it together. No one would dispute she's brave.
"You need to separate the disease from the person. It's nothing personal, he's not forgetting me because I'm in his life, it's the disease."
She speaks quietly and says the visitors have dropped off and she wishes they'd come back. It's also hard when people feel they can give advice.
Almost like constant grief

"'If he'd been doing a crossword every day he wouldn't have got Alzheimer's', somebody said to me. 'Why don't you give him 3000 units of Vitamin B a day, that will reverse it.' But that's really hard and I've sat down and cried when they've gone."
Sharyn has given up work to care for her husband of 40 years and renovations on their Otumoetai home are on hold - they have neither the energy nor the money.
"It is an illness where it's almost like constant grief, having to deal with losses the whole time," she says.
"Russ has always been an amazing gardener and just before (last) Christmas we took out the shade house and it just was devastating ... and (he) stopped making compost. Sounds really silly but it was totally devastating."
The disease has come out of the blue, with Clarke having no history of Alzheimer's in the family.
"As we're losing more and more of Russ it's just totally devastating. We've spent the last year getting to know the new Russ, the old Russ has gone and there are some things to like about the new Russ, quite a lot of things to like about the new Russ," she says, sharing a smile with her husband. "He's much more peaceful. He sits. He's here a lot more."
Physically, Clarke is okay but he struggles to find the words to communicate to the best of his ability and struggles to do minor tasks such as change the TV channel.
"You get sort of muzzled or messy, not messy, I just can't find out where is it," he says.
"For Sharyn and I, we've been really good together ... I'm not saying there's not going to be any more. Just be happy and enjoy what we've got left."
He does not always recognise his two youngest grandchildren or remember their names.
One of the Clarke's grandchildren recently asked Sharyn: "Who will I be when grandpa forgets who I am?'
She says: "I really, really thought about it, and then I thought, he carries us in our hearts. We might not be in his head any more, but we're in his heart."
Confused about everything
Denis Fursdon has lost his ability to speak properly.
He needs help with showering, and a moment of joy is when he manages to put his jumper on the right way round.
Since early March, Fursdon, who has frontal lobe dementia, has taken quite a dive, his wife of 35 years, says. He is often confused about everything.
Fursdon, 57, started exhibiting signs of dementia seven years ago but it wasn't until about four years ago a cognitive test confirmed his condition.
His mother has dementia and so did his uncle.
Sue, who works from home in Otumoetai designing and making cushion covers, is now his primary carer and it's not an easy task.
"I've been through the emotion side of things, crying, and why is this happening so early for us?" she says, turning to Fursdon, who smiles anxiously at her.
"You just get used to life and you get to read what I need to do for him. We all try and encourage our people to do things for themselves but when you see them not able to do things, you finish off for them."
Fursdon can still mow the lawns, sweep the path, weed the garden but he can't make a cup of coffee and he struggles to take things in on television, or sign his signature.
He can't remember his age and, on occasion, his two sons' names.
"They're not stupid, they're just forgetful and do these strange things," Sue says.
Last week she asked Fursdon to go downstairs and close a door. He disappeared for about two to three minutes and then came back upstairs with clothes pegs.
"Absolutely nothing to do with anything," she says, trying to make the situation light-hearted by laughing.
Every day is different
"If he's got one pair of clean socks in his hand and if he left yesterday's ones in his shoes, he's just totally confused.
"One day, he had a shave and came out with toothpaste on the end of his finger because he didn't know what he should be doing with paste and the brush.
"He needs help with showering, not every day because every day is different, but a couple of weeks ago, he got in the shower and he just stood there ... When there's more than one object in front of him, it's like this," she says looking from one hand to another.
"I sort of imagine a broken powerline that's on the ground and is wavering around and it sometimes now and then connects with what it should be doing."
When he speaks, he sometimes gets part of a right word and part of another word.
"It's like playing charades," Sue explains.
She does not like talking about Fursdon in front of him. On several occasions during this interview, he has tears in his eyes and Sue, who sits close to him, places a comforting hand on top of his.
Like an innocent child, he looks at her for reassurance.
"The men we've married have just about become our children in a way ... [But] when you love someone that's just what you do.
"You do it day by day and as they gradually move more into the depths of dementia, you move with them and you learn to cope."
Has it made her stronger?
"Absolutely. I'll never give up. Some days I think 'I just can't handle this any more' and I walk away and say 'come on woman, get over yourself, he needs you'. It's a very sad situation but it is what it is, and you just get on with it."
Lose them before you lose them

Jane Moore's journey with Alzheimer's disease was with her late mother.
The manager of Alzheimer's Tauranga, she says for the last few years of her mother's life, her mother did not know who she was.
"I was the nurse, someone who cared for her.
"Every now and then the rubber would hit the road and she'd say, 'Oh, is that Jane?'
"You lose them before you lose them.
"And of course, the person with dementia is going, 'Who is this person?' because their memory is sliding back.
"So, this doesn't look like the woman they married - lovely young bride. This is some strange lady who I wake up next to. Who is she?"
Moore, 59, says Alzheimer's New Zealand caters to the 7 per cent of people in the Western Bay with dementia - that's 200 to 300 people.
"A lot of people in the early stage haven't registered, accepted or connected.
"Then there's the people in residential care and the people that choose to walk the journey alone."
Alzheimer's Tauranga aims to educate and assists with everything from legal advice to support groups.
Moore says few couples seem to get divorced when dementia strikes.
"People that we have here are very committed to their person, be it frustrating and tensed.
"That's why we have support groups and can help carers and respite care."
She says there is some evidence to suggest experiences of trauma can affect the frontal lobe. Side lobe dementia is due to a chemical breakdown in the brian.
Attempting to prevent dementia means eating healthy, exercising, dealing with the issues in your life when they arise and keeping the brain active.
"You can dwell on the cruel but you've got to make it fun and you've got to remember the person is still there.
"They're still a person right to the day they die, be it that they might be different," she says.
What I have learned from writing this article, is that the carers of men and women with dementia are amazing.
They do not see themselves doing anything extraordinary. I do.
They are exhausted and heavyhearted but they do not give up.
They want people to accept and love dementia sufferers as they are today, not how they were.
Dementia does not diminish them as people.