DIVIDED BY DEMENTIA
Ex-soldier Tom Matiaha helped his wife fight against her hidden enemy for more than a decade before it got a name. Deena Coster reports.
Twenty-four years in the military did little to prepare Tom Matiaha for a battle he waged behind the closed doors of his family home. For years he fought against an unknown foe hiding inside Liz, his wife, the mother of his four children and the love of his life.
Eventually he found the ammunition to fight back, but it only came after he let go of his staunch, soldier-like bravado.
The couple married at the age of 20 after a two-and-a-half year courtship which began when they served together in the army.
What followed was typical for most couples, time spent working, setting up a home and welcoming children.
It was 20 years ago when Matiaha started noticing something different about the 51-year-old Liz.
Working as a secondary school teacher in South Auckland, while juggling the guidance counsellor and career adviser roles, Liz’s students and colleagues began to see the same things.
She was forgetting things, failing to turn up to class, losing control and struggling to cope emotionally.
Medical staff were called in and a battery of tests carried out. She remained under the watch of doctors for years, but there was no definitive answer to what was going wrong.
Meanwhile, the Matiaha wha¯nau were ‘‘floundering’’.
They didn’t know what was happening. It felt like they were living with a stranger.
‘‘It was no longer her,’’ Matiaha says. ‘‘It was quite devastating to see and watch happening. It was very difficult. You just don’t want to see that.’’
Over the years, things progressively got worse and in 2005, when the couple were living in Wellington, Liz had to stop working altogether.
‘‘By that time she was not really coping well on her own. She was forgetting where she parked the car,’’ Matiaha says.
She also became what is known as a ‘‘wanderer’’, roaming long distances away from home. During their time in the capital, Liz went missing from home three times.
On one occasion she managed to travel 25 kilometres from her home in Johnsonville to Stokes Valley, in the space of six hours. This would mean traversing the busy Ngauranga Gorge, navigating along State Highway 2 and negotiating the Hutt River.
To this day, Matiaha has no idea how Liz managed it without coming to any harm and due to his wife’s deteriorating condition, she had no way of telling him.
It was not until 2008 that a specialist diagnosed Liz with Alzheimer’s disease within five minutes of meeting her.
A name for his wife’s illness came as an absolute relief. ‘‘My personal difficulties ended there,’’ Matiaha says.
He no longer had to grapple with the whys; he could now focus on how he could better look after his wife.
This did not come without a change in Matiaha’s own mindset. Throughout Liz’s ailing health, he had tried to be staunch and be the ‘‘Ma¯ori warrior’’.
‘‘It dawned on me that it’s not about me, it’s all about Liz. What I had to do was change my attitude to assisting her to get through that moment,’’ he says. ‘‘I had to throw away my pride.’’ Having the medical lingo which explained what was happening to Liz, along with a manual he would often refer to, helped him to understand the dementia.
‘‘You have to be educated in it. ‘‘It’s hard but you’ve got to be patient and you’ve got to accept that you don’t know what you don’t know.
‘‘From a Ma¯ori dimension I think we may have dealt with it in the past as being a condition that we really didn’t understand,’’ he says.
Alzheimers Taranaki field worker Shirley McGlinchey works with people like the Matiaha wha¯nau and also helps run day programmes for sufferers. These provide a chance for people to get out of their homes and be social, a tactic to try and combat symptoms of the disease.
McGlinchey says numbers of Ma¯ori accessing help from services is on the rise. By 2026, the number of Ma¯ori with dementia is expected to increase to 5.7 per cent of the total number of sufferers, about 4500 people. This trend prompted her to develop a conference paper looking at some of the challenges Ma¯ori particularly struggle with. One element she highlights is the whakama¯, the shame or guilt which wha¯nau felt about either the diagnosis itself or the difficulties they face as carers.
Understanding the Ma¯ori experience of dementia is at the heart of a groundbreaking study spearheaded by Dr Margaret Dudley, a University of Auckland-based clinical psychologist.
Early findings suggest there is a varied interpretation of how tangata whenua view dementia, as there is no direct translation for the illness in Te Reo Ma¯ori. Dudley says during research interviews, several words have been used to describe it, including wareware (to forget or be forgetful), po¯rangi (crazy), rangirua (being in two minds), rorirori (clumsy or awkward) and wairangi (reckless).
While some interviewees spoke about the grief and loss attached to the diagnosis, Dudley says others did not see dementia negatively.
‘‘Some people think it’s a gift. Some people think it’s a link to the spiritual world,’’ she says.
‘‘It’s not seen as a defect or a disease.’’ Dudley says she has heard stories of some sufferers who had reverted back to speaking in fluent Ma¯ori. ‘‘That’s just been an amazing phenomena.’’
Dudley says while Ma¯ori wha¯nau demonstrate real reluctance to put loved ones in residential care, education about dementia remains vitally important.
A lack of information about the disease can be scary for families.
‘‘They don’t know much about it and they think they are all going to get it,’’ she says. ‘‘It’s the fear of the unknown.’’
For Matiaha, arming himself with the knowledge about his wife’s illness means he has conquered his own thoughts of dread.
Memories that Liz may have lost about herself are of great comfort to him.
‘‘I constantly remember her how she was and I deliberately throw my mind back to then,’’ he says. ‘‘I do that because I recognise now that I didn’t take a lot of notice back then.’’
Matiaha says unconditional love has been his best ally.
‘‘One of the biggest things I had to come to terms with, and change my attitude toward, was love,’’ he says.
As a foster child himself, he didn’t really appreciate the concept.
‘‘I didn’t understand what love really meant until Liz’s dementia started kicking in,’’ he says.
‘‘For me, I had to take some responsibility as a husband. It was not something that I was really good at.
‘‘I now understand what our vows meant – what we vowed – and that was over 50 years ago.’’
Liz, 71, is now in full-time care at Te Mahana rest home in South Taranaki and Matiaha goes there everyday to visit, help feed her meals and take care of her physical needs, including toileting.
‘‘I’ve got to help and do my best to continue to look after Liz. She is very valuable to me.’’
He counts himself as fortunate – he has a lot of help and support in place.
The decision for Liz to move into a rest home in 2016 was pre-empted by another health scare, but it highlighted to Matiaha the level of round-the-clock care his wife needed.
Although he accepted it was the best place for his wife, Matiaha still can’t get used to her absence, especially at night.
‘‘I always still have that feeling that I would love to have my partner beside me when I go to sleep.’’
Matiaha says Liz’s humour and love of music helps them get through the tougher moments.
‘‘I remember to keep those things going for her, and for me, as well.’’
He says he fully realises now just how amazing his wife had been before her decline.
Matiaha says before Liz got sick, she was a strong, capable woman – a wahine toa – who had been shoulder-tapped for a future leadership role within Ma¯oridom.
While it would sound cruel to most people to be robbed of all that potential, Matiaha says it was not something Liz herself ever worried about in the early stages of her illness.
‘‘I don’t recall her ever saying to me that she was frightened about what was happening,’’ he says.
‘‘She didn’t fear it.’’
‘‘It dawned on me that it’s not about me, it’s all about Liz. What I had to do was change my attitude to assisting her to get through that moment. I had to throw away my pride.’’
Tom Matiaha