My [Parkinson’s] Life
Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s.
Melanie de jager – caregiver for husband ron
Melanie de Jager met her husband Ron back in Christchurch, New Zealand when they both attended a school disco.
“We married in 1976 when I was 18 and Ron was 21,” recalled Melanie. “I was working as a bank teller and Ron was a survey technician with four years training.
“We decided to emigrate to Australia in 1977 because it was seen as the land of opportunity, with cheaper prices and higher wages. We didn’t plan to stay.”
In Australia Melanie began work in a bank but Ron found that the difference in terrain meant that he would need more training in his career.
“Ron became a train driver and he absolutely loved it,” said Melanie. “I worked in a bank for about ten years. For the first decade we lived around the Parramatta area and began our family. Ron always loved fishing and used to have a boat in New Zealand, so friends said we should look at moving to the Central Coast.
“It was 1988 by this stage and we were having our third boy and Ron was driving freight trains, doing shifts. It was too hard for me to continue working so I stopped. We lived near the train line, had a boat, and enjoyed the beach life. Each Christmas Ron would drive us up to Yamba, where we would camp for our holiday. Ron loved to drive.”
By 1991 the family had decided to build their own house, with Ron helping with the work when he could.
“He noticed his left hand shaking while he was doing work there,” says Melanie. “We were shocked it was Parkinson’s, but in a way it was fortunate we discovered it early and he could get treatment.
“It was a big secret because he was worried he’d lose his job. He managed to work another 15 years but each year he had to have a medical examination. Sadly, he was asked to leave after 23 years as a train driver. It was devastating,” said Melanie.
“He spent about 18 months in total shock and then decided we should buy a business to operate together. We bought two laundromats, but his condition began to deteriorate quite quickly. We had huge issues with his new medication, and he accidentally took too much.”
What Melanie, and many others, didn’t know was that this particular treatment had serious side effects of disinhibition – causing people to develop gambling or sex addictions or wildly overspend on shopping.
“Ron became a gambler, which none of us saw coming,” said Melanie. “He had a very frugal Dutch family background, and it was so hard to believe what was going on.
“I was busy in the laundromat and he was at the TAB. We lost a lot of money. I was working 60 hours a week and he could no longer work, and we had to sell at a loss in 2009.”
To make matters worse, Ron’s condition had deteriorated to the point where Melanie had to become his caregiver.
“His health was so bad,” recalled Melanie. “We had to get his doctor to actually tell him he couldn’t drive. After the call he just sat on the chair for ages, not moving. It was heartbreaking for him.”
Ron’s last interest was his boat, which didn’t require a license. He liked to fish alone, far out to sea, which led to him becoming lost one day.
“Fortunately one of the boys told Maritime Services the likely coordinates to search for him,” says Melanie. “We had to sell the boat because he refused to fish close in or with a friend. It was very hard for him.”
While trying to help her husband come to terms with the loss of his independence and hobbies, Melanie also had to take over the family finances, house, and car maintenance – all the things Ron had previously done.
“It was a pretty steep learning curve,” she says. “It was also things like me always having to drive, me ordering our meals when we went out, and me going up to the bar to get the drinks. Ron lost so much, but I lost my husband when I had to become his caregiver.”
That caring role further increased when Ron was diagnosed with dementia six years ago.
“This was incredibly hard for me and I felt very alone,” Melanie recalls. “At the time, our sons did not recognise the additional impact it would have on our relationships.
“Parkinson’s alone has had a huge impact on our sons. Our three oldest knew Ron before he had the disease and so they have struggled in a different way to the youngest one who says, ‘Dad’s had Parkinson’s all my life’.
“The impact of Ron withdrawing emotionally and physically when he was diagnosed, and the gambling brought a lot of hurt and anger. The boys stepped up when they saw the extra work I had to take on.”
Melanie had a stroke of luck when a social worker ensured that Ron was signed up for NDIS support six months before the cut-off age of 65.
“I must say it has been absolutely wonderful and I get three mornings of respite care,” she says. “It’s much better than the aged care services available. He can’t walk very far but he goes in a wheelchair.
“There has been a lot of decline in the last six months and I want to settle him into a nursing home before it’s a crisis. I’d like to have a say. So much of our life has been decided for us with his condition.
“I think we learned to be strong being in Australia without our family. Our church has also been a great support to us. We used to go to a Parkinson’s Support Group up here but Ron would just go to sleep, so we aren’t doing that any more.
“The good thing with Ron is there is no aggression with his decline and as he’s slowed down he’s become very appreciative. But there has been ongoing grief for the boys of the loss of their dad as well as extra responsibilities.
“They also fear getting Parkinson’s themselves. It’s been such a long journey for us all,” Melanie said.
Would You Like To Share Your Story?
By sharing your Parkinson’s story, you will help others in our community to better understand what it is like to live with Parkinson’s or care for someone who does.
If you are a caregiver, family member or live with Parkinson’s yourself, we’d love to hear from you.
Please email John Back, Communications Manager expressing your interest
Email John here
Other My [Parkinson’s] Life stories