The cruel twist of fate that started with a knock to the head
In Nykala Garrett’s world it’s when she wakes up that the nightmare begins.
A few months ago she was a busy mum of a blended family of five, working as a nurse and enjoying life with her partner Rikki Tako. Then Tako, 32, was hit on the head with the hook end of a crane in a workplace accident.
They thought he had concussion. It was tough, but manageable.
Except two weeks before Christmas everything changed and life would never be the same.
Tests showed Tako had a fast growing and aggressive cancer known as a brain stem glioblastoma. It was likely the young father had only a few months left to live. Glioblastoma can cause headaches, a loss of balance, weakness on one side of the face and difficulty walking. It grows quickly, destroying healthy tissue as it does. It can be treated but it cannot be cured.
Heartbreakingly the tumour was always there but probably wouldn’t have become a problem until he was in his 50s or 60s. It was the workplace accident that caused the cell dysfunction that led to its rapid growth.
When Garrett was first told about Tako’s cancer, she just froze trying to process what they had just heard, she says. She hurt for weeks. Now she’s in survival mode.
“I’ve already burnt out twice. I’m exhausted, my whole body aches, spewing, but I’ve just got to keep going.”
Because Garrett is “able bodied”, she says the family isn’t eligible for a carer to look after Tako.
“They want me to be Rikki’s 24/7 carer and look after the five kids, do the housework, and everything on my own.
I said to them the math isn’t mathing.”
Not only does she not have enough hours in the day, the family is now under massive financial strain having lost both Tako’s and Garrett’s incomes.
She has tried every avenue to get help for the family, but there isn’t anything available, she says.
“We had an assessment from community support services at the hospital. They offered me 15 days funding.”
But Garrett hasn’t seen any of that funding and it’s less than the minimum wage anyway.
She currently gets a supported living payment and an accommodation allowance from WINZ, which she is grateful for. But after they’ve paid their weekly rent of $700, done the groceries and paid the household bills there’s almost nothing left for the family to be able to enjoy their last days with Tako without stress.
The financial stress just adds to what is already a difficult situation, Garrett says.
They wished there was more financial help that was easily accessible for people in their situation.
And the children, aged 4, 6, 9, 11 and 16, are also struggling to deal with the situation and are reacting to it in different ways.
The youngest, for example, knows something is going on but can’t deal with it, so it’s “tantrum central” with her, Garrett says. And the oldest wanted to give up his study to work and help out. They talked him out of it.
Then there is the night time, which offers no relief.
Tako is tall, too tall for an electric hospital bed that can be adjusted to allow him to sleep sitting up to prevent his respiratory system giving way.
Instead he sleeps propped up with pillows in the couple’s bed, right next to Garrett, who can’t sleep out of terror she will wake up to find him lying dead next to her.
And there is no way to get respite care for Tako to give Garrett a break, even if she wanted to, she says.
“Rikki is Māori, (Ngāti Porou), so putting him in respite isn’t an option culturally. It’s not how they do things, you look after your own.
“We weren’t given the option of going down the Māori health track.”
All they are asking for is a helping hand, she says. It seems unfathomable to her there isn’t more help available.
“Mum helps. A lot of people don’t know what to say or do so stay away. I have a friend who isn’t scared of it.”
One thing the family realised during this time was that while they had lots of photos of their children, they didn’t have any as a family.
So, they had a family portrait taken celebrating Tako’s heritage.
In the photo they donned traditional Māori cloaks and had temporary tā moko painted on that reflected Tako’s Ngāti Porou roots.
“The kids loved it,” Garrett says of the rare moment of joy the photo, which hangs in the lounge, brought.
As she’s talking funeral celebrant and New Plymouth District councillor Sam Bennett calls in to drop off some papers.
Bennett has done a few funerals for their family and has become close friends, Garrett says.
“So we’re using him to officiate when the time comes for Rikki.”
As for Tako, he says he’s “all good”. He’s just taking it one day at a time.
“But I didn’t realise you had to be rich to have cancer.”
The family have a givelittle page to help ease the financial pressure.