Caring can be a wonderful experience, but it can also be isolating and lonely.  We hope you will find our stories about other New Zealand carers uplifting and inspiring, and help you feel part of the large community of 420,000+ carers!  Many of these stories are from past issues of Family Care magazine.  To request a subscription to our quarterly magazine, delivered directly to your home, phone (0800) 777 797, email sara@carers.net.nz, or read more at our Family Care section at the website!

A Lifetime Of Care

The father-son bond shared by Nick and Sven Carter has carried them through several turbulent decades.

When Nick's marriage ended Sven was 15. Nick's ex wife shifted out of the family home with the couple's other three children, and Nick has cared alone for Sven ever since.

Nick is now 74 and Sven is 42.

Sven has autism and needs Nick's help with most daily living tasks.

Nick assists with dressing, toileting, and bathing, and runs the family home in Rotorua.

Nick was a 25 year old electrician when he emigrated to New Zealand as a young man. For Nick, New Zealand offered a fresh beginning, and opportunities to pursue interests such as hunting.

One of his first jobs was working for New Zealand's forestry service, collecting pine cones for analysis. This seeded Nick's lifelong interest in trees (he now owns a chestnut orchard on the outskirts of town, where he and Sven spend many afternoons).

Nick believes Sven's autism was caused by vaccinations as a baby. He developed epilepsy, suffered major seizures, underwent many painful invasive medical tests, and was given a cocktail of powerful drugs.

"He went through some terrifying experiences at a very early age, and was injected with dyes and other substances which I feel affected his brain. In those days you were only allowed into hospital for brief periods to see your child."

Nick continued working while his wife juggled their young family and Sven's growing health needs.

"There was nothing much we could do apart from comforting Sven, and keeping on. At that stage autism was not very well understood; it was a mystery then, and still is to some extent."

Despite his concerns for Sven, Nick enjoyed family life, but the marriage faltered and finally ended in the late 1970s. Nick did not want Sven to live in an institution and decided to keep Sven at home with him.

"I could see that my son needed my support. Sven did go to Tokanui for an assessment and spent a month there. If you were over the age of 15, even if your mental age like Sven's was much less, you were kept in the adult psychiatric ward. It was a completely inappropriate environment for him."

"I used to visit every weekend and saw he was getting thinner, had become very withdrawn, and was clearly unhappy."

"The person in charge of the ward was the local shopkeeper, who worked there part-time, and spent all his time in the office with his feet up on the desk, smoking and reading Best Bets. I was glad to get Sven out of there."

Nick says he and Sven have always been close, even though Sven can't speak.

"As a baby his cot was next to the bed, so I could hold his hands and comfort him while he was having seizures. Sometimes I'd sit up and rock him in my lap. My wife was a heavy sleeper and felt that she had cared for the family during the day, and that it was my turn to care for Sven at night. I did it happily, even though it was strange to be awake for much of the night and then work full-time each day."

After the couple separated, Nick continued working until 1987, then took voluntary redundancy. He has cared full-time for Sven ever since.

Sven does not behave aggressively and is able to understand his father. Nick's ex wife died of cancer, but he has contact with his other children, and hopes they will support Sven when he no longer can.

"I have never had close friends, or felt the need for respite, or accessed formal support services," says Nick. "I guess I mistrust services because Sven has been physically abused by support workers in the past, and can't speak or defend himself. That's why I'm wary
now of using respite care or leaving him with others."

Nick and Sven live frugally, partly because that is Nick's nature, and partly because he has been saving for a secure future for his son, who will always need care.

"I'm organising my will so that all of my assets will go into a trust when I die. Hopefully there will be enough money to pay for quality care for Sven. I can't help worrying that he will be abused or exploited or neglected, because it's happened before."

"At the same time, I know I'm not going to live forever. I wish I was 30 years younger. It's something I grapple with every day."

Nick's hope is that although his other three children did not grow up with Sven, they might help to support him in the future.

"Perhaps they can take him out occasionally, talk to him, give him affection. I hope that Sven's life can have quality when I'm gone."

Photo Copyright: NZ Herald



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