‘ She’s my mum and I love her’
‘It’s the secret we tried to hide’ Today the Herald begins The Brains Trust, a six-part online video series confronting the reality of dementia in New Zealand. Carolyne Meng-Yee explains how it all started
Dementia might be New Zealand’s biggest but least understood problem. It’s already the number one cause of death in Britain and for women in Australia and the same trend looks likely to happen here. In a six-part series, Herald journalists Mike Scott and Carolyne Meng-Yee tell the stories of Kiwis affected by the disease — families, carers, scientists. And for both Scott and Meng-Yee, it’s personal.
She doesn’t know her name or what day it is. Anne Pead has lost her mind.
Her daughter Deborah, an accomplished public relations executive, says dementia has robbed her mother of her personality.
It began with Anne squirrelling away jars of honey, writing herself maps so she wouldn’t get lost on the way home and withdrawing large amounts of money from her bank
She’s the powerhouse of my life, she’s dynamic, effervescent — one of the best mums anyone could hope for . . . but mentally there is very little there.
daughter Deborah Pead
account.
“She’s the powerhouse of my life, she’s dynamic, effervescent — one of the best mums anyone could hope for and a best friend but mentally there is very little there. At the Mount Eden Care Village, she turned into a kleptomaniac and would go into other rooms to steal bottles of wine, mobile phones and remote controls,” Deborah said.
Dementia is a terminal disease that can last up to eight to 10 years. There is no cure. As our population ages, the number of cases in New Zealand is expected to rise from 70,000 to 170,000, costing the economy $4.6 billion.
Dr Lynette Tippett, from Brain Research New Zealand, says dementia is an umbrella term that describes a change in thinking abilities including memory, language and visual spatial processing.
“There’s a change in the person’s ability to function in everyday life. So their ability to complete ordinary tasks is noticeably impaired.”
She says other risk factors for Alzheimer’s, a common form of dementia, include hearing loss in midlife, untreated high blood pressure, social isolation, physical and cognitive inactivity.
Deborah has told her family she wants to be euthanised if she is diagnosed with dementia.
“I think they have seen the pain I’ve gone through with my mum and they understand.”
Born in the year of the Ox, my mother is stubborn, refuses to wear a hearing aid and is increasingly forgetful. She calls it “old age”. My colleague Mike Scott’s father, Bob, died of dementia.
Last year, we were on the phone, talking work stuff. I mentioned my mum, he told me about his dad. Together we decided to start a conversation about this cruel, heartbreaking, deadly disease that doesn’t care who you are, who you were or what you might have become.
“It was like an almost unconscious knowledge that dementia needs to be talked about and it hasn’t been,” Mike said. He remembered one boss asking us: “Do you think we can make this interesting for readers?” Interesting? Important? “How important has this turned out to be?” Mike asked.
“It’s going to be the biggest killer in this country.”
Lisa Burns, national spokesperson for Dementia New Zealand, calls the disease a “growing silent epidemic”.
Her grandmother died from dementia and she says four out of five Kiwis have a connection to it.
“I think it is difficult for people to talk about dementia because of the fear and stigma.
“As our population ages, the numbers will rise from 70,000 to 170,000 and it’s going to cost the economy $4.6 billion. It’s a terminal illness that can last up to eight to 10 years and there is no cure for it.
“Dementia is the leading cause of death in the United Kingdom and for females in Australia. Someone is developing dementia every three seconds,” Burns said.
Mike is a video journalist. I have a background in television but moved to print media 14 years ago. Together we have worked on many stories. He’s the one behind the camera capturing beautiful images, while I interview and report. As journalists, we expect our interview subjects to give of themselves — to be open, honest and transparent.
I’d describe Mike as calm, considered, and private. He’s controlled. Yet he agreed to allow the filming of an MRI scan to see if he was predisposed to dementia — the disease that claimed his father, the man with whom he had a fraught relationship.
“Sharing my personal story has not been comfortable,” said Mike. “Being in front of the camera has been really tough. Talking about your upbringing and personal information is confronting and makes me uncomfortable and the fact dementia is a part of our family.
“As my sister said, ‘it’s the shameful secret we tried to hide’.”
It’s impossible to truly understand what it’s like to live with dementia but, at Summerset Karaka, we were offered the opportunity to participate in a simulation test designed to create confusion.
We had to complete simple tasks wearing goggles that distorted our vision, latex gloves that hindered our hand movements, headphones filled with random voices that sounded like a pub on a busy Friday night. They put stones in our shoes to throw us off balance. Mike said walking in the shoes of someone with dementia was confronting for him — but, he said, he felt empathy for his father.
“This sucked big time. I would give up, why would I bother? This is too hard, I am going to shut down. You are struggling to make everything work. The noise in your ears, the lack of vision, the clumsiness and not understanding the questions. It would be frustrating to watch me function like this and I would be annoyed at myself.
“I feel really bad about my dad now. He was suffering with this and it’s terrible. Even if we weren’t getting on so well, he deserved more patience and care than he was getting.”
As a little boy, Mike and his siblings lived in fear of their father. They remember Bob Scott as angry, violent, and an alcoholic.
Lying in bed, Mike would feel powerless as he listened to his parents arguing.
“Dad was physically aggressive and intimidating towards mum. One night he had been drinking whiskey and chased her out of the house with a knife.”
Mike’s parents separated when he was 15. He says it was a great day.
As dementia started to manifest, Bob got in touch with his son, who didn’t know he had it.
“He was a lost and scared soul,” said Mike. “He was paranoid about people and started taking out money and transferring it to weird places. He was childlike — in a sense pathetic.
I feared him in my childhood, then he became the child.”
When Bob moved into a retirement home in Invercargill, Mike’s sister Christine Cole found Post-It notes all over the house.
She said: “I went and cleared out
his house and realised how much he had been struggling. He had notes everywhere about how to do things. One of the notes was ‘My daughter’s name is Christine’. I think there was an intelligent part of him that knew what was happening. He really tried.”
Making the web series was incredibly challenging. It took a year to produce, and Mike and I occasionally locked horns — we learnt the art of compromise, not an easy thing for either of us.
“Dementia as the subject matter is not super exciting but it’s really important,” said Mike. “To get people engaged on it has been difficult and to actually get people to open up their homes to us was equally hard.”
It was my job to find what we call “the talent” in our industry. Many rest homes were reluctant to let us in. Instead, I set up interviews in people’s homes. We got to see a husband caring for his wife; a daughter trying to cope with her mother fading away in front of her; another daughter whose mother just wants to be a little girl again.
We met and filmed experts in the field of brain research, discovered innovative care villages housing people living with dementia and explored the possibility of new treatments, including a blood test that will be used for screening and monitoring progress of the illness.
But the real heroes are those brave families who graciously invited us into their homes to share their personal and painful stories.
Deborah Pead is a public relations CEO and close friend of mine. We’ve had many raucous dinner parties together. When her mother Anne and her partner Rex joined us, Anne was the life and soul of the party. She was cheeky, gregarious and fun. When I interviewed Anne at the Rawhiti Retirement village, she thought I was the cleaner.
Deborah said dementia robbed her mother of her personality. Anne is now a diminished version of herself.
In the web series, Deborah said: “I know with certainty, if my mother had known what was ahead, she would not have wanted the pain of what’s happening right now.
Not just for her family to see her the way she is but her own life, it’s got no meaning right now. Mum has value to me because she is my mum but we can’t have a conversation, she can’t recognise me, she can’t recognise herself.”
We met Warwick Hickling in Gisborne. He calls himself a “brokendown cow cocky”.
On March 28, 1959, Warwick Richard Hickling made a commitment to look after Pamela Mary Gordon in “sickness and health”. The 83-yearold former farmer never expected to end his days being “a househusband and nursemaid” but he lives to care for the woman he calls Pummy. He bathes her, tenderly brushes her hair and applies her lipstick. He gently feeds her with a spoon.
“This is the woman you’ve spent 61 years with and you’ve made love to thousands of times. Whatever I wanted to do in life she always backed me. When we started on the farm, I couldn’t have done it without her. She had three little kids under 5, she was in the yards chasing the sheep, I’d be crutching all day. She’d sort out all the wool then we’d go home, and she’d cook a meal. You don’t forget that,” Warwick said.
Just before Christmas, after our visit, Warwick put Pummy into care while he had a hernia operation. She fell over backwards and broke her hip and has since been hospitalised at Leighton House, an aged-care facility. Warwick also fell ill after his hernia operation went wrong.
“I wanted to take Pummy home but the consequences of a broken hip and so forth put the kibosh on all that,” he told me this week. “Also, after my operation, I had septicaemia and a massive bladder infection, which put me back into hospital. I see Pummy from 7 in the morning and feed her breakfast and stay with her ‘til 7.30 at night, when she sleeps.”
Sometimes Rita Marx forgets her own name, let alone the names of her six children, 22 grandchildren, 33 great grandchildren and two greatgreat grandchildren. When she steps on to her marae, she is the little girl O¯from pape, tired of the Pa¯keha¯ world and looking to live the simple life — milking cows, growing potatoes and catching fish off the rocks.
As her memory faded, Rita moved in with her daughter. Verna Falwasser had been caring fulltime for her mother for a year when we interviewed them in Whakata¯ne.
Verna said her mother’s culture kept her connected to the world she grew up in. “As her dementia advances, she wants to go back to
pape, that’s where she was born and raised. I won’t be surprised if she stops speaking English one day and will ko¯rero in Ma¯ori, so I’d better start learning fast!”
Lisa Burns doesn’t believe society places enough value on people living with their dementia.
The Dementia New Zealand spokesperson said it was not something to be feared and we need to tackle the stigma attached to it.
“If you’re caring for someone who has dementia, your ultimate is to protect that person’s dignity, their legacy, their place in the world, the things they have achieved and to remember them for who they are, and not the condition.”
“Don’t say to someone, ‘look, I think you’re getting dementia’, because that will instil fear in that person from the outset. Share your concerns and worries but treat it with kindness and respect,” Burns said.
As the web series came together, Mike revisited old photos of his father.
He regretted he wasn’t more empathetic, that their relationship was nonexistent.
“I guess in one way, dad taught me how to be a good dad by not being one. Warwick is my hero.
“He and Pummy are the greatest love story — the sacrifice he’s making is brilliant. Warwick is the kind of person you want as a dad. He’s a dude. A real dude.”
Maybe it’s time I have a gentle conversation with my mother.