Anita
- admin1356
- Jul 31
- 7 min read
Out the back of Anita and Brent’s house is a little room with a very serious looking ice bath. Anita lifts the pool cover to reveal a deep stainless-steel tub filled with water currently set to 8 degrees.
Brent was the one who started with the ice baths because it helped with aches and pains from sport. But now Anita does it too, calming those first shocked breaths and, for a little extra mental agility, she counts backwards for 3 or 4 minutes.
“You work your way through the discomfort,” says Brent, “and you actually look forward to going into the ice bath. You change your mindset that it's not actually ice. You're in a relaxing place. A happy place. Once you cross over to that, you can turn it into pleasure.”
This ability to reframe a negative situation into a positive one goes beyond ice baths. This is a family trying its best to approach Anita’s diagnosis of early stage Alzheimer’s in the same way.
The first signs were hard to detect. Life was already hectic. In 2019 Brent and Anita decided to expand their panel beating business to include a mechanical division. As Brent focused on that, Anita focused on bringing the analogue accounts into the digital age.
With one grown daughter and three teenagers at home, there were the usual home life pressures as well which Brent admits Anita was doing on her own.
When Covid struck Brent started working on projects at home as well, building an extension so his ailing mother could come and live with them.
Anita found she wasn’t coping in the way she usually did, which left her frustrated and lacking confidence. A doctor suggested she was burnt out and needed a holiday.
But there were other signs. Anita took a trip to Christchurch on her own to visit her mother.
“That first night I was sleeping in a room I’d been in before and I don't know what the heck happened,” says Anita.
She lay down and started having vivid overwhelming thoughts about deleting work emails.
“I thought, “I need to get up. I need to go to the bathroom.” I couldn't find the door in the dark. I couldn't find the light. I didn't know where the light switch was.”
Back at home, Brent’s business partner had a family member with dementia and suggested Anita was showing some familiar signs, but Brent felt they were just going through a tough patch.
“I'm a Mr Fix It. So I’m saying, OK what do we need to do? How can I make it easy? We’re going through a lot of changes. We just need to figure it out.”
But then one day Brent went up to the office and got a shock.
“Anita had paper everywhere. I couldn’t figure out what she was doing. And it was like, This is not right. This is not Anita. There is definitely something wrong here.”
They found another doctor, got a referral and finally got the diagnosis of early-stage Alzheimer’s.
“After you get the diagnosis, I think the first thing that is hardest is dealing with the acceptance of the diagnosis. Because until you've accepted that you can’t move forward. I just wanted to put a pillow over my head and hibernate so that was the next thing - to find acceptance,” says Anita.
They gathered the whole family together and broke the news.
By this stage Brent’s mother was living with them and dealing with her own illness.
“I knew it would impact on Nana. But I showed nothing but positivity from that point on and she knew I was in a good space,” says Anita.
Brent’s mum died five months after Anita’s diagnosis. Looking back now, having her to stay for the last year of her life changed family life for the better.
“We're in understanding mode now. We're closer than we were before. We had all been living in different spaces doing our own thing. As much as we love our kids, we probably didn’t spend enough time with them. I personally felt that because I was focusing on the business. But it’s different now. We're not individuals anymore. We're more of a collective.” says Brent.
“The kids have been loving and caring,” says Anita. “After my diagnosis Thomas came up to me one day and said, who’s this beautiful woman in my kitchen. He was all of 17 years old.”
The whole experience has also focused their daughter Caity on what she wants to do as a career.
“She’s started doing an online caregiver course. She’s always been a very practical person,” says Anita.
“She enjoyed what we were doing when Nana was living with us,” continues Brent. “She likes looking after people, helping people, so social work or something like that.”
Anita’s diagnosis has led to another positive discovery - the Young Onset Dementia Collective.
“It's not a small thing. It's a massive thing,” says Brent. “They've changed our lives,” adds Anita.
From the start,
Anita has been a firm fixture at the Fair Food kitchen where the Young Onset Dementia Collective group volunteer every Monday.
“I feel so lucky to be involved,” she says. “It’s so fulfilling. I’m very capable of doing these things. In the kitchen there is no one-upmanship, it’s a community. And when Brent comes home from work, my cup is full. It’s exciting to be part of something so positive.”
Anita is mindful of the toll her diagnosis takes on Brent and the family, which is another reason she’s grateful they’ve discovered the Young Onset Dementia Collective, where the focus is not just on the person with dementia but their partners and caregivers too.
“My concern is for Brent’s well-being, having taken all this on his shoulders, it's not just about me and what my journey is. It's about making sure that we're both OK, because it's our journey. It's our journey as a family,” says Anita.
The connections Brent has made through the Young Onset Dementia Collective have made a difference too.
“I met Andy [Sandra’s partner]. I was really struggling a little bit in my headspace, but meeting these people and listening to their stories, I thought, oh this is positive, this is really good.”
As they navigate their own challenges and meet others in the Young Onset Dementia Collective, one thing is clear.
“We need support. I think acknowledgement by the government that this isn't going away and there's a possibility that it's only going to get worse. It's a huge impact on families. There needs to be greater acknowledgment by the government, and it needs to be investigated,” says Brent.
“It's not a lot to ask for it really, is it?” says Anita.
For now, though, they’re focusing on everything they can to slow the progress of Anita’s illness.
“We do 'Boxfit' whenever we can,” says Brent. “She's got a good punch. Honestly, she's fantastic. And I just do a couple of switches and make her think. She comes away and she's like; oh, I really liked that.”
“Yeah, it's amazing,” says Anita. “I didn't think I could do that. The things I didn't know I could do.”
“She’s more physical now. She was always analytical, but she’s gone from Miss Intellect to Miss Sporty Spice. I notice how animated she is after she’s been active.”
For Brent, Anita’s Alzheimer’s diagnosis is another opportunity to reframe something negative and try and make it positive.
“I've done everything I can, gone as far as I can go with the business and the house.
We've sacrificed so much to get to where we are today. Is it relevant anymore? Why do I need to keep doing what I'm doing? Maybe I just consolidate, make things smaller and just concentrate on the things that really matter in my life.”
“My time is limited as well, and I’ve got my best friend to think about. I don't have as much time as I thought I had. So what do I do now? How do I put that into perspective? I could be doing things differently and spend more time with somebody I deeply care about,” says Brent.
ANITA'S POEM - CAPTAIN OF MY OWN SHIP
All the choices – all the different paths
Where do they lead? Where do they go?
A universe to explore with a mere lifespan to do it in
But I’ll take it as it comes - ever watchful of open opportunities
To ponder and to accordingly act upon
My future is moulded by my own hands
I am responsible for the pride of success
And the pain of failure or lost chances
I must rise above it and show my worth
Rather than bathing in self-importance or self- pitying
Sink or swim the choice is mine – no-one else’s
Attitude is the Captain of the ship
Who carefully navigates the rocks and stormy weather
Take the reins and take control
And the Universe is in your hands !
(Anita - Age 18)
ANITA'S POEM - THE DISCOVERY
There is a place inside of me
That’s different than it used to be
A new beginning of a new adventure
That’s yet to be written by pen and paper
Adjustments that need to be made
Emotions that need to be allayed
Take each step – don’t be afraid
You can do it – you are brave!
Obstacles to overcome
YOU can tackle every one
Just take them one by one
Then the battle will be won
Believe you can do it and you can
No room for doubt – don’t let it in
If you can do that YOU will win!
Positivity is your best friend!
(Anita - 23 November 2024) Written just after Anita’s young onset dementia diagnosis in 2024
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Getting help needed is a living challenge for the group behind Young Onset Dementia Collective.
If we wait for Government, Ministry of Health or under-funded agencies, it will be too little too late for our people.
For many the situation is dire. Help is needed NOW so we made a collective conscious decision to do everything we can to help ourselves. Spouses, partners, carers of people living with younger onset dementia have real life reasons driving combined determination.
Help us keep minds engaged and spirits lifted for those affected. Plus support carers in their financial, mental and wellbeing journey.
